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mrsD
04-22-2009, 08:20 AM
I am starting this thread to include some of the most useful information on B12.

This subject is very popular now, and especially on these forums.

Having a spot to refer people to answer questions, saves time and effort, since repeating over and over the same information becomes difficult.

I am going to have this thread stickied at the top of the pages here so it can be found easily.

First off, here is a link to Rose's webpage. She has been the anchor for all of us here on this subject. I haven't seen her here lately, but I suspect she reads at least.

http://roseannster.googlepages.com/home

Rose put together a wonderful collection of information and has personal reasons for wanting others to learn about the TRUTH about B12 in the body. She herself suffered for a long time with very low levels and the terrible consquences of that.

I am going to add to this thread, some of the information I've used to answer questions here about how to test for B12 problems, and how to use it correctly.

I encourage all posters who come here to learn and ask questions to participate in this thread. We all learn from each other.

edit:
This is a link to the blood work study done on oral cobalamin and injectable done on patients. It gets buried in this long thread so I am adding it here:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2532799/table/T1/#TF1-4
and this is the full article:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2532799/

and this is a link to Dr. C. Snow MD's link on new treatment protocols for B12 deficiency:

http://neurotalk.psychcentral.com/post698522-70.html
this link is post 70 in this thread.

These two additions are easier now to find in this first post. ;)

{Edit 4-8-13:}
today 3-9-14
I had a very good video from YouTube on this portion of this post.... as of today... 3-9-14 it comes up as "private" only on YouTube. So I have removed the link. It was a great video...if it returns, I'll repost it.




mrsD
04-22-2009, 08:59 AM
This question comes up very frequently.

One has to understand that the research information about B12 has changed radically in the last 10 years. Not all doctors are aware of these changes.

This link, to a physician website, is one good one to start with:
http://www.aafp.org/afp/20030301/979.html
(it can be copied and taken to your own doctor)

It brings up the question of oral vs injectable. (and was put on the net in Mar. 03),

Oral can work well for most people. I should be taken on an empty stomach, because passive absorption is how the B12 is going to be absorbed in the intestine. Drugs given in microgram doses, cannot be absorbed reliably with food/fiber present. The amounts are so small they are lost in the food (like a sponge).
Digoxin and thyroid hormone also are in this category. So since B12 is a microgram nutrient, it should have the same recommendation.

For people with poor stomach acid levels (due to genetics or drugs used), it is estimated that about 10% or less of the B12 is actually absorbed. So the apparent high dose taken orally is not
something to be afraid of. Labels often show %RDA on them and those huge numbers for B12 often frighten patients unnecessarily. (example==66,000 % of RDA etc)

Here are two other research papers showing oral B12 is as effective as injectable:

Am Fam Physician. 2009 Feb 15;79(4):297-300.Links
Evidence for the use of intramuscular injections in outpatient practice.
Shatsky M.

Providence Medical Group, Portland, Oregon, USA. mlsdo2000@comcast.net

There are few studies comparing the outcomes of patients who are treated with oral versus intramuscular antibiotics, corticosteroids, nonsteroidal anti-inflammatory drugs, or vitamin B12. This may lead to confusion about when the intramuscular route is indicated. For example, intramuscular ceftriaxone for Neisseria gonorrhoeae infection and intramuscular penicillin G benzathine for Treponema pallidum infection are the treatments of choice. However, oral antibiotics are the treatment of choice for the outpatient treatment of pneumonia and most other outpatient bacterial infections. Oral corticosteroids are as effective as intramuscular corticosteroids and are well-tolerated by most patients. High daily doses of oral vitamin B12 with ongoing clinical surveillance appear to be as effective as intramuscular treatment. Few data support choosing intramuscular ketorolac over an oral nonsteroidal anti-inflammatory drug unless the patient is unable to tolerate an oral medication. For other indications, the intramuscular route should be considered only when the delivery of a medication must be confirmed, such as when a patient cannot tolerate an oral medication, or when compliance is uncertain.

PMID: 19235496 [PubMed - indexed for MEDLINE]
from http://www.ncbi.nlm.nih.gov/pubmed/19235496?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

and

Fam Pract. 2006 Jun;23(3):279-85. Epub 2006 Apr 3.Click here to read Links
Oral vitamin B12 versus intramuscular vitamin B12 for vitamin B12 deficiency: a systematic review of randomized controlled trials.
Butler CC, Vidal-Alaball J, Cannings-John R, McCaddon A, Hood K, Papaioannou A, Mcdowell I, Goringe A.

Department of General Practice, Cardiff University, Wales, UK.

BACKGROUND: Vitamin B(12) deficiency is common, increasing with age. Most people are treated in primary care with intramuscular vitamin B(12). Several studies have reported equal efficacy of oral administration of vitamin B(12). OBJECTIVES: We set out to identify randomized controlled trial (RCT) evidence for the effectiveness of oral versus intramuscular vitamin B(12) to treat vitamin B(12) deficiency. METHODS: We conducted a systematic review searching databases for relevant RCTs. Outcomes included levels of serum vitamin B(12), total serum homocysteine and methylmalonic acid, haemoglobin and signs and symptoms of vitamin B(12) deficiency. RESULTS: Two RCTs comparing oral with intramuscular administration of vitamin B(12) met our inclusion criteria. The trials recruited a total of 108 participants and followed up 93 of these from 90 days to 4 months. In one of the studies, mean serum vitamin B(12) levels were significantly higher in the oral (643 +/- 328 pg/ml; n = 18) compared with the intramuscular group (306 +/- 118 pg/ml; n = 15) at 2 months (P < 0.001) and 4 months (1005 +/- 595 versus 325 +/- 165 pg/ml; P < 0.0005) and both groups had neurological responses. In the other study, serum vitamin B(12) levels increased significantly in those receiving oral vitamin B(12) and intramuscular vitamin B(12) (P < 0.001). CONCLUSIONS: The evidence derived from these limited studies suggests that 2000 microg doses of oral vitamin B(12) daily and 1000 microg doses initially daily and thereafter weekly and then monthly may be as effective as intramuscular administration in obtaining short-term haematological and neurological responses in vitamin B(12)-deficient patients.

PMID: 16585128 [PubMed - indexed for MEDLINE]
from http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=search&term=16585128

I personally don't think sublingual vs oral swallow is much of an issue. I don't believe that sublingual works very well. This form has historically been the favorite OTC version, but B12 is a huge molecule and water soluble and not likely to cross the small area under the tongue in reasonable amounts of time. What really happens is that the sublingual dissolves and the resultant saliva is swallowed. And what can happen is that the tablet kept under the tongue may irritate tissues over time, and cause inflammation in sensitive people or those reactive to flavors or sweeteners. If you want to dissolve your sublingual under the tongue fine, but I don't think you HAVE to.

mrsD
04-23-2009, 09:16 AM
Well, if you are reading here and have a need great enough to
end up here looking for answers, logically you probably need
B12.

More and more people are turning up low in this nutrient.
Vegans, who eat a diet devoid of animal protein, need to supplement this. They like to claim that their own bacteria that live in their GI tract will make enough for them, but that often does not turn out to be true. These bacteria may be killed off with antibiotics.

Our liver stores up to 5 years of excess B12 that has been eaten.
And it follows that if you have liver damage, less of this can be relied upon.

Lifestyle today is critical when it comes to B12. The over the counter availability of acid blocking drugs, impairs the utilization of B12. Acid normally breaks up proteins, and makes the B12 available to intrinsic factor which grabs it and facilitates its absorption in the intestine. (nature has developed this strategy because B12 is normally only in foods in tiny microgram amounts.) Previously to the appearance of these drugs, B12 deficiencies were found in people with hereditary errors who cannot make intrinsic factor, or who had their stomach removed completely or partially, or who have autoimmune disease which damaged the cells making intrinsic factor, OR who are getting older and no longer making adequate stomach acid-- called achlorhydria.

Now babies are born deficient (if Mom was on a vegan diet and did not take vitamins) and many in the general population are deficient because they take Zantac or Prilosec daily for years.

Some other drugs also upset B12 levels. One common drug which is no longer available orally here in US is Vioform (clioquinol). This drug was taken off the market in Japan and US for causing blindness and neurological damage. It is still found in creams for treating fungal infections however. But its tragedy in Japan led to aggressive use of B12 in that country, and its more aggressive interpretation of adequate blood levels. So we see Japanese papers using B12 for MS in enormous doses, and we see a higher cut off for "normal" in blood testing there as well.

Other drugs that reduce B12 are:
colchicine
most antibiotics (long term use)
some retroviral drugs for HIV
metformin
birth control pills
acid reducing drugs

One misconception doctors still have is that anemia must be present to have a real deficiency. This has been shown in papers to not be the case. Sometimes one blood test will hint at low B12 before anemia becomes severe, and that is MCV.
But many people can be low and not anemic.

The link I gave in the first post here, suggests various testing
http://www.aafp.org/afp/20030301/979.html
It has a chart suggesting testing and treatment for those at 400 and below.

Testing for MMA, and homocysteine are still considered better indicators than serum B12 levels. Rose's website has far more detail on this subject.

Since B12 has no upper toxic limit set by researchers, one can be flexible in using oral supplements safely.
I think that people very low in testing, need to bring that level up as quickly as possible.
There are 5mg (5000mcg) tablets available orally for about 30 cents a day. Take one of these daily on an empty stomach for 2 to 3 months and get retested. If you show levels above 1000, that is a good start. You can continue with this if you want, and feel you need it. Or you can reduce to 1 or 2 mg a day, thereafter. Most test ranges are not kept up to date, and most labs have a ceiling test of 2000. They will report this as HIGH and some doctors --who are trained to fear anything HIGH-- think this is "bad". There is no evidence anywhere in the research that high serum levels of B12 are harmful in any way.
Should you become ill however, or develop some new symptom, it is best to contact your doctor for evaluation.

I personally think 1mg of B12 daily is enough for most people once they bring up their blood work to normal.

People with MS and Fibro may have to take larger doses for a longer period of time. Research has shown that the fluid called the CSF is low in B12 for these patients. Spinal taps are not routinely given, but for MS patients who have them as diagnostic tools, ask for the B12 measurement when the test is done. Others may be offered a spinal tap, especially in rapidly progressing or long lasting PNs. Ask for the B12 measurement if you have one.

The next post is going to discuss the differences in cyanocobalamin and methylcobalamin, as well as some others.

mrsD
04-23-2009, 12:08 PM
Cyanocobalamin is the commercial synthetic form of B12 that was patented more than 40 yrs ago. For many years it was the only one. The body cannot utilize this form of B12 and has to
remove the Cyano portion (cyanide) and methylate it in order for the tissues to use it properly.

For many people cyano versions are adequate. It is the only version most doctors know about. It is in all their reference books, still.

But there are some people who:
1) do not have the genetic capability to methylate folic acid and B12 properly. These people will not improve with cyano version.

2) some people do not have the genetic ability to handle CYANIDE in any form. These patients may react to cyanocobalamin with worsening of symptoms (toxicity).

Luckily we have a very inexpensive oral version of methylcobalamin available without an RX (OTC) which can easily be used. But many doctors don't know it even exists.

1mg orally daily can cost patients about 9 cents a day.
Since it is easy to obtain and so inexpensive why take anything else? Many local stores do not have this yet, but it is very common online. Jarrow, Source Naturals and other reputable makers all have a version. Check out vitacost.com or iherb.com for examples.

There are alternate injectables too. When the cyano information started to become public, another form called hydroxycobalamin was marketed. Some doctors may use this, but it is more expensive. Methylcobalamin injections are available custom ordered at compounding pharmacies. This makes them the most expensive. This methyl version is being used in the Autism community.

Injections are invasive and more expensive, and really do not offer much incentive to ambulatory patients. They are still used for bedridden, or unconscious patients. But their days in the doctor's office are no longer necessary.

For people who really want to spend money on genetic testing, there are tests now that will tell if you are failing to methylate vitamins properly. These tests may not be covered by insurance (most likely not) and cost over $400. They are newly appearing in OTC outlets for less...more like $125. But since the methyl versions of the B12 and folate are available, it is not really absolutely necessary to test DNA at this time.

My observation after years on the net is that if people are having neurological symptoms severe enough and for long enough to appear here, they have some significant problems with their metabolic ability to handle some nutrients. Since these nutrients are now available in the activated forms for very little money, why use something that may not work? If methylcobalamin cost the same as RX cyano or more, I could see trying the cyano first. But the reverse is actually more true, so why bother with cyano at all?

There is another form of activated B12 called coenzymated.
It has another name dibencozide. This one is commonly available from Country Life. Its generic name is adenosylcobalamin and it is active also. But it tends to be more expensive. Some people like it better, and body builders tend to favor it for muscle building etc.
There is also an oral form of hydroxycobalamin. This has been suggested to be used to detoxify cyanide which can occur during acute smoke inhalation. This form is not as easy to find to purchase, is a bit more expensive, but is out there.

The actual chemistry of B12 and folic acid... and the entire methylation chemistry that they are involved with is really complex. I don't think going into it here is necessary for most people.

I can't find a Kegg module for B12... but here is the one for
methylation of folate:
http://www.genome.jp/kegg/pathway/map/map00670.html
Each box is one enzyme that can be affected by a genetic error/failure. The black arrows all come to folic acid to provide a carbon atom for it. Sort of like "all roads lead to Rome".
The methylation of B12 is complex too.
http://books.google.com/books?id=lZwpVn2Wi2EC&pg=PA116&lpg=PA116&dq=methylfolate+donates+methyl+to+cobalamin&source=bl&ots=5Pck8IQ9Mp&sig=9jfE4aHIn0NwwjzwOclBwObaUPU&hl=en&ei=SJ_wSd1JjpYxt_ChyA8&sa=X&oi=book_result&ct=result&resnum=7#PPA122,M1
page 122 of this link gives some details for those who like this stuff ;)

MelodyL
05-05-2009, 09:54 AM
Mrs. D.

I read ALL of your posts.

Much appreciated.

Mel

tinglytoes
07-04-2009, 11:19 PM
[QUOTE=mrsD;500230]Cyanocobalamin is the commercial synthetic form of B12 that was patented more than 40 yrs ago. For many years it was the only one. The body cannot utilize this form of B12 and has to
remove the Cyano portion (cyanide) and methylate it in order for the tissues to use it properly.


Hi again, GRATITUDE and appreciation for your links and incredible service on this site. I am working my way thru the links and slowly learning what I need to tackle the during next steps in discovery. Seeing local neurologist in couple weeks need a starting point for ruling out what is not happening.

My questions regard nerve fasciculations. Small, subtle, yet very rapid involuntary muscle contractions in my calf muscles. A sort of pulsing which is not painful but disturbing since it mimics larger movements which could happen if I was walking etc... Unable to rest as a result.

I could not find any references in the nutritional info. Or PN stuff. Is it lumped in with RSL and not a separate symptom? I have been diagnosed with CKD, CHF, HCV, Cryoglobulenemia which induced vasculitis, Stroke '03 Treated with interferon alpha a and rituxamab. Currently on 3 anti-hypertensives plus Toursemide, (learned of thiamine deficiency in regard to these). Get monthly b B12 shots for anemia. healthy diet.

Stroke was located in basil ganglia portion of brain, with severe RSL or Parkinsons like tremors as main symptoms. Along with left side partial paralysis. Overcome much of after affects thru sheer stubbornness and refusal to give up. Lately feeling more than a little sick of being my own medical treatment planner without any interest from 12 or more doctors.

What a nightmare. If not for meditation, I would appear as unhealthy as my list is long. Not sure if it is lucky or not actually, since many docs simply make an assessment that I must be crazy or psychosomatic since I look so normal. (Reverse health bigotry is what I call it). Additional challenges on top of everything else to be taken seriously. A common refrain I notice.

Would love some support in my journey a little shy and uncertain how to proceed. Suggestions welcome....

Thanks and happy Fourth to you and friends and family!

mrsD
07-05-2009, 07:24 AM
Torsemide will also deplete magnesium.

Here is the list of nutrients that Torsemide affects negatively:

calcium
magnesium
potassium
sodium
Vitamin B1 (thiamine)
B6
Vit C
Zinc

If you are using an ACE inhibitor, you would have additive losses of zinc.

Anything that impairs the circulation in the extremities may create muscle symptoms. You can test this by using moist heat on the leg affected. If your electrolytes are normal, and your calicum/magnesium ratio is good, you might see some improvement with moist heat carefully used.
Soaking in epsom salts might help that feeling too.

You have some very serious medical problems which means you should clear any supplements with your doctor(s) before using.

I would also get a Vit D test done ASAP.
The new medical video that just came out explains why:
http://neurotalk.psychcentral.com/thread92116.html

Edit to add, it might be a good idea to get the DNA methylation testing to see if you have elevated homocysteine issues affecting the blood vessels. This is called MTHFR polymorphism test. Patients who do not methylate properly develop cardiovascular disorders commonly.

Gyrene
07-07-2009, 03:02 PM
Thanks Ms. D. We all need all the information we can get in order to "corner" this problem, and posts like yours truly make "gathering" a lot easier.

Patricialyn
08-24-2009, 08:31 PM
Hello Friends,

I have been told that taking just "any old" vitamin supplement, and even more important the vitamin B's should be cautioned, due to the synthetic vitamin pills do not absorb properly, and don't really truly even add to your health.

So, my question is this, if allowed can you tell me what possible brand names of B12 I should purchase, that have been proven to work properly.

I know that you would not be trying to push any particular name brand, just passing on information for health purposes.

Also, I would preferably like to take a approved FDA vitamin, do you think they are safer?

Thanks so much, I did read through all these past posts, but did not find the answer, or if it was mentioned did not fully understand still, what type, or brand that I should take.

Patty:winky:

MelodyL
08-24-2009, 09:15 PM
Hello Friends,

I have been told that taking just "any old" vitamin supplement, and even more important the vitamin B's should be cautioned, due to the synthetic vitamin pills do not absorb properly, and don't really truly even add to your health.

So, my question is this, if allowed can you tell me what possible brand names of B12 I should purchase, that have been proven to work properly.

I know that you would not be trying to push any particular name brand, just passing on information for health purposes.

Also, I would preferably like to take a approved FDA vitamin, do you think they are safer?

Thanks so much, I did read through all these past posts, but did not find the answer, or if it was mentioned did not fully understand still, what type, or brand that I should take.

Patty:winky:


Hi PattY;

Over two years ago, I went to iherb.com and bought the JARROWS Methyl B-12 5000. Been taking it every day since without a hitch.

Best thing I ever did for my body. I did try a cheaper one (not that this one is expensive because it's not), but I did not get the same results.

So, for me, the Jarrows is the way to go.

Best of luck

Melody

mrsD
08-25-2009, 02:14 AM
There has been some evidence that folic acid supplements work better than food.

Here is a recent article about vitamins vs food:

http://www.healthnewswebsite.com/nutrition/antioxidant_supplements.html

For example, the absorption of the synthetic form of folic acid found in supplements or fortified foods is considerably better than that of food folate. In another example, the Institute of Medicine advises adults over age 50 to obtain vitamin B12 mainly from fortified foods or supplements containing B12. This is because age-related loss of stomach acid in some older individuals may reduce the availability of B12 from food sources.


Some people cannot methylate B12 from the commercial cyanocobalamin type of B12. This is why methylcobalamin is a better choice to use. Since MethylB12 is so inexpensive, there is no reason NOT to use it.

since95
10-03-2009, 08:32 AM
How long should you wait to eat after taking B12 in the morning on a empty stomach?

mrsD
10-03-2009, 09:02 AM
At least 1/2 hr , but 1 hr is better.

The micrograms of B12 can be lost in food. Microgram dosing of drugs has been found to be severely impacted by presence of food. Esp fiber foods that breakfast often has. Micrograms is a very very tiny amount of anything. Because I know this from my training...I push the empty stomach factor. I have not seen any of the OTC websites picking this fact up for B12...and it has been over 5 yrs now since it was known for drugs. That just illustrates how medical info can get walled into little niches and not applied to other situations!

I had a patient in a clinic once whose doctor kept raising her thyroid dose. She was at .225mg which is really high.. and getting no response. Turns out she was taking it with Oatmeal!
She was a young woman with an intact thyroid...no Hashimoto's either. She ended up well, finally at .1mg where she belonged, after I intervened.

MelodyL
10-03-2009, 10:05 AM
At least 1/2 hr , but 1 hr is better.

The micrograms of B12 can be lost in food. Microgram dosing of drugs has been found to be severely impacted by presence of food. Esp fiber foods that breakfast often has. Micrograms is a very very tiny amount of anything. Because I know this from my training...I push the empty stomach factor. I have not seen any of the OTC websites picking this fact up for B12...and it has been over 5 yrs now since it was known for drugs. That just illustrates how medical info can get walled into little niches and not applied to other situations!

I had a patient in a clinic once whose doctor kept raising her thyroid dose. She was at .225mg which is really high.. and getting no response. Turns out she was taking it with Oatmeal!
She was a young woman with an intact thyroid...no Hashimoto's either. She ended up well, finally at .1mg where she belonged, after I intervened.


Hi Mrs. D.

You probably saved that woman's life.

I take the Methyl B-12 as soon as I get up in the morning. Under my tongue. Around 8:15 a.m. By the time I take my walk to my local little breakfast nook where I have my one egg (or egg white), with my sliced tomatoes ( I bring a cup of my sprouts), and sprinkle on top). Well, it's about one hour after I do the Methyl B-12 that I have my breakfast.

For me, it works just fine.

I take 5000 each and every day. So far, no side effects, just good energy and no pins and needles and tingling.

Oh, on an interesting note, last night Alan said "my feet don't burn, they just tingle". I said "what do you mean your feet don't burn, I thought that's what they've been doing for 18 years because your neuro diagnosed you with small fiber (I think large fiber too, but I'm not sure).

He said 'what exactly do you mean when you say BURNING".

So I said "well, in my case when the weather is not cooperating, my whole foot burns for two seconds. NOTHING COMPARED to what it did when I was first diagnosed with Diabetic Neuropathy two years ago.

I immediately went on the Methyl B-12 and the rest is history. He tried it but nothing happened.

So I do get very few episodes of slight burning, but it's NOTHING. Maybe they are healing? Who knows. I certainly can live with it because I dont' get the zipping zapping, etc.

Alan, on the other hand explained that what I thought was BURNING in his case, turned out to be EXTREME TINGLING. So when Alan says to me "My feet are doing a dance", now I know he means TINGLING and not burning.

God only knows, I would have spent the next 18 years thinking this guy's feet were on fire, and they were REALLY TINGLING LIKE CRAZY.

Neuropathy is a very weird disorder.

Melody

dbw52
10-04-2009, 11:50 AM
Thank you for being such a help!

mrsD
10-09-2009, 12:52 AM
This company is releasing a new B12 oral delivery system:

http://www.emisphere.com/eligen.html

A new way to deliver B12 orally, using lower doses.

http://www.businesswire.com/portal/site/google/?ndmViewId=news_view&newsId=20091008005223&newsLang=en

http://www.emisphere.com/eligen_library.html

This company is trialing a 5mg dose form...
http://www.emisphere.com/oral_vitamin_b12.html
Emisphere's pharmacokinetic study demonstrated that mean Vitamin B12 peak blood levels were more than 10 times higher for the Eligen® B12 5mg formulation than for the 5mg commercial formulation (12847 pg/ml and 1239 pg/ml, respectively). The time to reach peak concentration (Tmax) was reduced by over 90%; the mean was 0.5 hours for the Eligen® B12 5mg and 6.8 hours for the commercial 5mg product. Mean AUC_(24h) values were 54618 for Eligen® B12 and 23131 for the commercial 5mg product. Improvement in bioavailability was approximately 240%, with absorption time at 30 minutes. The study was conducted with a single administration of Vitamin B12; there were no adverse reactions, and Eligen® B12 was well-tolerated.

But it is unclear if it is methyl or cyano at this time.

I expect this will raise costs, to those who take B12, but it appears to be an improvement in absorption.

MelodyL
10-09-2009, 10:32 AM
This company is releasing a new B12 oral delivery system:

http://www.emisphere.com/eligen.html

A new way to deliver B12 orally, using lower doses.

http://www.businesswire.com/portal/site/google/?ndmViewId=news_view&newsId=20091008005223&newsLang=en

http://www.emisphere.com/eligen_library.html

This company is trialing a 5mg dose form...
http://www.emisphere.com/oral_vitamin_b12.html

But it is unclear if it is methyl or cyano at this time.

I expect this will raise costs, to those who take B12, but it appears to be an improvement in absorption.


Mrs. D.

I clicked on the emisphere link and read the info.

How exactly is the DELIVERY of this oral B-12 different than what I am doing presently. Taking the Jarrow 5000 sublingually each morning.

Thanks much

Melody

mrsD
10-09-2009, 10:40 AM
The new system is vague...they don't want to reveal their patent IMO.

One of the links shows how their additive enables large molecules to cross membranes in the GI tract.
Up until now, if you have no intrinsic factor working, high dose B12 is only passively absorbed in the intestine. This is why high doses are needed, to push a little bit (less than 10%) into the blood stream. This is why empty stomach is important now with the oral as it exists today.

It appears this technology is going to be applied to insulin and other large molecules that cannot be given orally at this time due to stomach acid and poor absorption.

It appears that the B12 is the first application for this. I guess it will generate some income to support the research for the other uses.

I just hope it is not priced so high as to be out of many peoples' reach. And I couldn't find what type of B12 they are doing either.
I hope it is methylB12.

I think those questions will resolve soon, as it will be out soon.

rscowboy2005
11-05-2009, 11:29 AM
I know carrot juice provides lots of vitamin A, but do not know if its B complex vitamins have the B-12.

Does anyone know?

Thanks

PS: Couldn't live without my juicer!!

MelodyL
11-05-2009, 11:36 AM
I know carrot juice provides lots of vitamin A, but do not know if its B complex vitamins have the B-12.

Does anyone know?

Thanks

PS: Couldn't live without my juicer!!

I can't imagine any diabetic drinking loads of carrot juice. The concentrated sugar alone would skyrocket my glucose reading.

but I agree. I love my juicer also. I just juice for my husband.

Melody

mrsD
11-05-2009, 11:41 AM
B12 cannot come from veggies. It has to come from animal sources. Veggies have other B vitamins.

You can check your food choices for nutrition content here:

www.nutritiondata.com
They don't have fresh carrot juice...but there is this one:
http://www.nutritiondata.com/facts/vegetables-and-vegetable-products/2757/2

sguinn
11-18-2009, 03:37 PM
I have been diagnosed with mild depression and have been prescribed a low dosage of prozac. My symptoms are not feeling sad, angry, etc but more tired, sluggish, lack of motivation, etc. I have read online that taking B12 could help. Is this something I should do? If so, what kind do I take? I have looked online and there are so many. It looks like some have b-6 and folic acid as well. Thanks in advance for your help.

mrsD
11-18-2009, 04:17 PM
Folate has been shown to be low in people with depression.
Same with DHA (a long chain fatty acid found in fish and fish oils).

The newest data also shows low Vit D leads to depression.

Low B12 actually damages nerves, the myelin that insulates them is maintained by B12 and other nutrients. Myelin damage also shows up as numbness/tingling and peripheral nerve pain.

Certainly B12 helps with neurological problems, but it is not the only player in nerve maintenance.

So you would have to pay attention to several things. You can be tested, for Vit D and B12. I'd get that done to see if you need them.

Many people with simple low energy complaints, do well on a simple high potency B-complex. A B-50 type or something similar once a day in the morning often makes people "feel better". That is where I would start. Many people have posted on boards that this brand was very good and useful for them:
http://www.iherb.com/B-Right-100-Capsules/110?at=0

After testing you will see if you need more B12 than this product offers.

Starglow
12-26-2009, 10:27 AM
I've had tingling in my hands/feet for almost two months now and my feet started burning on the bottoms about a week ago. I went to the GP doctor and they tested my blood.

Two days later, they called me and said my B12 level was way too high (+2000) and that I should stop taking the B-complex vitamin supplement I was taking.

The burning in my feet is still there, but has decreased somewhat. I've also been exercising every day and doing some lite yoga. My acupuncturist put me on some herbs, so I can't tell at this point if stopping the B-complex vitamin, taking the herbs, exercise, or a combination of the three is helping my feet. The "night tingling" in my hands and feet have also decreased.

My experience and the advice of my doctor seems to contradict what has been presented here regarding high levels of B-12, which has left me a bit confused. I won't see the nero doctor until next month and have no official DX yet, but plan to consult my acupuncturist next week regarding taking the B-complex and my unexplained high levels of B-12 in the blood test results.

I would appreciate any comments/observations/suggestions from the group.

Thanks.....! :)

mrsD
12-26-2009, 12:09 PM
Welcome to NT....

You are free to Google B12 anytime, and find reputable links to satisfy your doctor. I have some on this thread in fact.

You can follow your doctor's advice, and see if you get worse, or no better, and then decide 1) find another doctor, or 2) take control of your body yourself. When it comes to B12, this supplement is very safe to deal with yourself. This is not true for everything in life however.

We would like to think in a perfect world, our doctors know everything that will help us and make us better. But the truth of the matter is that they do not. In a decision like this, you need to consider if doctor's advice is better than your body's needs.

Do this-- make your doctor prove to YOU that a serum level of B12 at 2000 is harmful. I'd like to see what he/she comes up with!

In fact lab ranges are arbitrary. They are taken from volunteers who appear healthy, and averaged. They are not based on people who are supplementing anything. Extremely high B12 in a person who IS NOT supplementing, may point to some rare conditions. That is all they mean.
And furthermore, what is very lame about the US, is that the LOWER end of the range is out of date, compared to other countries. Normal is considered 150-200 here and in Japan anything below 500 is abnormal.

MelodyL
12-26-2009, 12:40 PM
Hi Starglow:

Sorry to hear that you are having tingling and burning. My last B-12 level was 2000 and I explained why this was so to my primary care physician. He listened and said "melody, keep doing what you are doing".

See, I also take a B-Complex once a day. And I take 5000 of the Jarrows formula of the Methyl B-12.

What exactly is in your B-Complex? Does it say Cyano or Methyl B-12. there are various kinds. And I completely agree with Mrs. Doubtfire (that's how I learned what I learned.....I LISTEN TO MRS. DOUBTFIRE.

I don't think I'd be where I am today if I didn't LISTEN TO MRS. DOUBTFIRE.

So, do as she suggests. Also list what other supplements you are taking.

Everything (sometimes, doesn't go together).

Are you diabetic?

Melody

echoes long ago
12-26-2009, 01:48 PM
could it be possible that you were getting too much B6 in your B multi vitamin and since you stopped your B6 level has decreased and thus you are feeling better. High B6 can cause PN and also make it worse if you already have it. Did you have your B6 levels tested also?

MelodyL
12-26-2009, 02:48 PM
could it be possible that you were getting too much B6 in your B multi vitamin and since you stopped your B6 level has decreased and thus you are feeling better. High B6 can cause PN and also make it worse if you already have it. Did you have your B6 levels tested also?

Echoes:

EXCELLENT question.

Melody

echoes long ago
12-26-2009, 03:11 PM
aw shucks, thanks.

Starglow
12-26-2009, 10:50 PM
Hi again....

I am not a diabetic as far as I know and my blood sugar levels were normal.
Here's the B Complex info: Members Mark (Sam's Club brand)

Thiamin B1 50mg
Riboflavin B2 50mg
Niacin 50mg
Vitamin B6 50mg
Folic Acid 400mcg
Vitamin B12 50mcg - Doesn't specify specific type of B12
Biotin 50mcg
Pantothentic Acid 50mg

Other Supplements:

Glucosamine - 1500 mg
Omega -3 Fish Oil - 1700 mg
Flaxseed Oil – 200 mg
Vitamin C w/Rose Hips - 1000 mg
Vitamin E – 1000 I.U.
Co Q10 – 400 mg
Ginko Biloba – 60mg
Green Foods – Complex
Niacinamide – 500 mg
Alpha Lipoic Acid 600mg - Just started taking this today

Cholestar K-27 Caps, 2caps/3xday for reducing Cholesterol
Contents:
Chromium - 50 mcg
Inositol Hexanicotinate - 375 mg
Red Rice Yeast extract - 175 mg
Garlic extract – 100 mg
Pantethine – 50 mg

Although I have no problems exercising which includes riding a stationary Lifecycle for 12 minuts, today I had problems driving for the first time since my feet started burning last week. I can drive for a bit, but then it becomes hard to press the pedals with my right leg because it becomes weak and my toes cramp up, especially in heavy traffic. I had to put my car in park at traffic lights to rest my leg/foot, but even then it was hard to get back home.

mrsD
12-27-2009, 07:34 AM
I think it is unlikely that 50mcg a day of B12 would put you so high.

Echos has a point however, about your B6 intake. The only way to isolate this problem is to discontinue the Complex and only use the B12 separately.

Red Yeast rice works like statins. It contains statin-like chemicals, and we know statins can cause PN. Each of these supplements varies in how much statin-like actions are present, depending on the quality of extract used by each manufacturer.

Riding bicycles move the ankle alot. If you have any tarsal tunnel entrapement issues or arthritis, you can aggravate the nerves with this form of exercise. I have scar tissue from a surgery on my left instep, and the bikes always aggravated pain in that foot for me.

Your foot burning can be due to many things, in other words.

Starglow
12-27-2009, 05:10 PM
Could it be possible that my B12 levels are high because the body isn't absorbing B12 for some reason? If so, what could possibly cause that to happen? Is there a specific test that can be done to check B12 absorption rate?

I'll stop the B-complex and just take B12 as suggested and see what happens.
The burning in my feet seems to be less now, but my right leg is still weaker than the left.

Thanks for all your help and support! 8-)

mrsD
12-27-2009, 05:28 PM
B12 levels cannot become high, if you are not absorbing.

They can become high if your kidneys are not excreting it.
So some studies show high B12 levels when no supplements are taken, as kidney related.

High levels of B12 with no supplements, may occur with some leukemias, or some intestinal dysbioses (infections with certain B12 forming organisms). These are pretty uncommon and not usually found with a B12 screen.

daisydc
02-13-2010, 07:31 AM
I am a new poster on this board. I am a 45 year old female living with a undiagnosed neurological disease for five years. I have a severe B12 deficiency with such symptoms as numb hands and feet, lancinating pain into my fingertips, memory loss, cold fingers and toes, lack of energy ect. The disturbing part of my disease is that I have an abnormal EEG with silent temporal seizures and now have developed a slight tremor in my right side. Many times my right side feels dead and not attached to my body. The most annoying symptom is a deep body vibration that seems to come out of the center of my chest and radiated down my arms and legs. I have had many MRI's and SSEP's and blood work without any answers. All were negative for placques or abnormalities. Only the EEG was abnormal. No one thinks I have MS which mimics all of these symptoms. I am a self employed chiropractor and am aware of long term effects of B12 deficiency. I have been doing intramuscular shots intermittently for five years. Is there anyone out there who has anything like this, and has anyone gotten worse while administering shots. I am at a loss and refuse to be tested anymore since I spent $18,000 out of pocket last year and got no answers. Any feedback would be greatly appreciated.

mrsD
02-13-2010, 08:33 AM
I am a new poster on this board. I am a 45 year old female living with a undiagnosed neurological disease for five years. I have a severe B12 deficiency with such symptoms as numb hands and feet, lancinating pain into my fingertips, memory loss, cold fingers and toes, lack of energy ect. The disturbing part of my disease is that I have an abnormal EEG with silent temporal seizures and now have developed a slight tremor in my right side. Many times my right side feels dead and not attached to my body. The most annoying symptom is a deep body vibration that seems to come out of the center of my chest and radiated down my arms and legs. I have had many MRI's and SSEP's and blood work without any answers. All were negative for placques or abnormalities. Only the EEG was abnormal. No one thinks I have MS which mimics all of these symptoms. I am a self employed chiropractor and am aware of long term effects of B12 deficiency. I have been doing intramuscular shots intermittently for five years. Is there anyone out there who has anything like this, and has anyone gotten worse while administering shots. I am at a loss and refuse to be tested anymore since I spent $18,000 out of pocket last year and got no answers. Any feedback would be greatly appreciated.

Hello Daisy, and Wellcome to NeuroTalk!

The first question I'd like to ask you is what form of B12 were you getting by injection? Cyano or hydroxycobalamin? (some people do get compounded methyl B12 --did you?) Injections only show blood levels for 72 hrs (according to my pharmacology reference). The body does not like bolus vitamins and I think injections are not really the way to go. Most of the high B12 might be excreted. Daily use, is more biologically similar and that is why oral works well too.

Cyano is hard on some people. If they cannot activate it properly to methyl, then response would be poor. Hydroxy form does not carry that problem.

I'd give up the shots and do 5mg oral of methylcobalamin daily--on an empty stomach--- for several months. Then get retested. That seems like alot of money for correcting something that could be much less expensive. You might want to get a MMA test too. And Vit D.
People with chronic pain, often do better pain wise if they correct a low serum Vit D level.

daisydc
02-13-2010, 09:23 AM
Thank you for the quick response. The reason that the costs were so prohibitive was that both my sister and my first cousin have MS. The neuro's here were so convinced that I had MS that no stone was left unturned in the testing. Which by the way was all inconclusive. The MS clinic in Rochester NY thought I might be one of the 1% of patients who do not show MRI signs but still have relapsing remitting MS. I have had neuro consults, ortho, GI/GU, acupuncture, chiropractic, massage, Reiki, blood work and detoxification. All I know is the past five years have been very stressful and frustrating.I have been using cyano 1000 mcg 1x week for one year, then once/two weeks and finally once per month. I read and researched all I can on the B12, cyano vs methyl vs hydroxy and the abilities of the body to absorb each of them. I am taking No Shot Methylcobalamin but according to what you have said, not enough. I am also upping my folic acid, not folate but folic acid sold by Metagenics to bring down my homocysteine levels. It is all so complicated. If you take too much folic acid it actually reacts and raises the level of homocysteine which is bad. It is all a balance I guess. My MMA was within the normal range, I think less than 1. When I stop the shots, I end up where I am now with the ugly symptoms that are misunderstood, misdiagnosed and inconvenient to say the least. I have not in the past found methyl in the injectible form. Also when I have the B12 serum levels tested, they are within the normal range, although the symptoms are intermittent, sometimes completely gone and other times like right now that they are pretty intense. To add to it all, my 46 year old sister is dying of cancer. I have learned to never say it can't happen to me.......................

mrsD
02-13-2010, 01:27 PM
You can have methyl compounded into injections. The autism community does that. Use a compounding pharmacy.

But I don't think injections are the way to go long term. The body does not handle bolus vitamins well. It wants to excrete them.
B12 is carried into the CSF and is also stored in the liver also.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC488275/

For about 100 dollars you can have a DNA MTHFR test to show if you have trouble methylating folic acid and B12. There is a special folate called l-methylfolate that bypasses this genetic error which occurs in about 1 in 10 people. It is in the RX vitamin Metanx and also OTC as MetaFolin by Solgar in 800mcg dose. There is a discussion right now on our forum here about it and the failure of a new product posing as an equivalent generic. I have more details there.
http://neurotalk.psychcentral.com/thread114302.html
It is also available RX in a very very high dose of 7.5mg as Deplin for mental depression. Regular folic acid has to be methylated in the body before it becomes useful and active.
If one has the gene polymorphism failure, regular folic acid does nothing.

On that thread I discuss the problems of TOO MUCH folate as well.

Many of us here do very well with once a day oral B12. The trick is to take enough, and to take on an empty stomach.

daisydc
02-25-2010, 04:05 PM
mrsD:
Thanks for the valuable information and links on this subject. I have started 5000 mcg orally of methylcobalamin daily, upped my calcium and magnesium, seperated the folate from the B12 and also doubled my Vit D3. I have suffered from severe anxiety related to the B12 deficiency and may be one of the rare cases that actually had a psychotic episode that has no other explanation than the B12. It is very scary and so completely out of character for me, it almost sent me over the edge, literally. The only possible reason for the mental dysfunction that we can come up with is the B12 issue. And it came out of no where. Although I am under much stress with my sister dying, it was not any more than usual. I cannot find literature that discusses the symptoms of someone like myself that has been treated for five years for this disease, but still has flare ups and depletions along the way accompanied with physical and psychological impairments. Is anyone else having similar things happening to them? I was under the impression (wrong of course) that once you started treatment, the symptoms would disappear and the neurological and psychological damages that have been done would be repaired. Or at least I would not get worse. I have read many studies about the irrational and psychotic behaviors of subjects low in B12 that are fully rectified with treatments. I am very interested in meeting with my local health care providers and giving them a presentation concerning my case. I am lucky enough that I have professional relationships with them and they really will listen to my story. There is certainly enough information out there, it is just not getting into the right hands and the right minds. I appreciate all the information and help and will continue to pass on any information I find on the subject.

mrsD
02-26-2010, 07:47 AM
I love it when people pass information on to others, esp doctors.

Since they won't learn this for themselves, I guess the patients have to teach them? :rolleyes:

There was an episode on the Discovery Show Mystery Diagnosis, about a poor woman who had terrible symptoms for 10 yrs, including poor balance, vision changes, panic attacks, etc, which totally changed her personality. (they didn't go into "psychotic" but it could be possible I think). She saw a show with a rheumatologist on it, and in desperation went to her, and was quickly diagonosed with B12 deficiency. (her level was around 200). None of the many doctors she consulted for TEN YEARS found this cause!

You will probably need B12 for life. Don't be tempted to stop it when your levels get better-- some people do and as a result they relapse.

I'm glad you are feeling positive now, and I hope you continue to spread the word and improve!

daisydc
02-26-2010, 02:39 PM
mrsD:
None of the B12 symptoms have really scared me yet, the tingling, tremors, mind fog, pins and needles everywhere, but this anxiety and terrible mind games that I am going through are really scary. I don't know how long I can hold out without help of some kind. I have had it twice since November. My therapist is aware and so is my family and they hope I make a complete recovery. My doc wants me to take an SSRI (LEXAPRO) for the anxiety. I don't know what to do anymore. I think the high levels of B12 can also make you jittery and nervous. I am holding on by just a small thread. Any help would be appreciated. Thanks so much from someone who really understands.

mrsD
02-26-2010, 04:00 PM
There is a condition, which BTW is not rare, called Pyroluria.

It can be misdiagnosed as mental illness. Estimates are that 10% of people can have it...and it can cause severe anxiety and mood swings.

Please read this:
http://www.drkaslow.com/html/pyroluria.html

b onna
02-28-2010, 12:46 PM
Thanks for ALL your help this morning, MrsD.

I'm waiting for my vitamin order to come in and will make sure I ask my neuro what my B12 number is when I see her in two weeks, if not sooner. I hope the tests come in quickly so I can get in there quickly and start being proactive to get this under control.

Martin_12
02-28-2010, 10:47 PM
In the USA B12 is measured in picograms/mL (pg/mL) while in Australia and other countries that use the SI system the units are picomoles/L (pmol/L).

According to the American Family Physician paper by Oh and Brown (2003)
http://www.aafp.org/afp/2003/0301/p979.html
the conversion factor is approximately 4/3.

To convert from pmol/L to pg/mL multiply by 4/3 or 1.355

To convert from pg/mL to pmol/L multiply by 3/4 or 0.738

Martin

simsons
03-29-2010, 01:03 PM
My B12 is 206. Neuro says normal is from 180 - 800 so mine is normal low. Cal you have symptoms at this level. I have weird vibrations/shaky feeling most of time. Specailly when I am standing or sitting too long. ANA was positive at 1:160 but eveyhting else was negative. EMG negative for left side. All tests so far are negative. I have pain where I have vibrations. In leg calf muscle and behind neck. Am curious. Have thryoid but controlled with meds.

MelodyL
03-29-2010, 01:19 PM
My B12 is 206. Neuro says normal is from 180 - 800 so mine is normal low. Cal you have symptoms at this level. I have weird vibrations/shaky feeling most of time. Specailly when I am standing or sitting too long. ANA was positive at 1:160 but eveyhting else was negative. EMG negative for left side. All tests so far are negative. I have pain where I have vibrations. In leg calf muscle and behind neck. Am curious. Have thryoid but controlled with meds.

Hi.

Yours is NOT NORMAL LOW, Your's is TOO low. Much too low.

I take 3000 to 5000 of Methyl every morning. My last test had my B-12 level at 2000. I feel fine and have no symptoms of neuropathy (which is why I went on Methyl b-12).

Doctors DON'T KNOW ANYTHING ABOUT METHYL B-12.

They practice medicine, NOT NUTRITION.

Just wanted to add my two cents

mrsD
03-29-2010, 01:25 PM
Please read the beginning of this thread. There is a link on the first post to American Family Physicians website that recommends anything below 400 should be treated.

206 is low enough to get permanent neurological damage with time.
Print out the article and take it to your doctor....definitely he is behind the times.

It is appalling how many people are tested by doctors and then told these antiquated readings are "normal" ...it is a waste of resources and sends the patient down a long painful path of degeneration!

Melody is right....start now to fix yourself. It is not expensive, it is safe, and effective. Take the oral at 5000mcg (5mg) daily on an empty stomach, for 3 months. Then get retested. You can decrease as you choose or stay at the 5mg level. Choose methylcobalamin for best results.

Please read the beginning of this thread carefully.

ouchmyfoot23
05-07-2010, 01:07 PM
I just spent the last few hours reading about B12 from the first post. I'm amazed! I know my neurologist tested me for a vitamin deficiency, but didn't tell me the results.

I'm going to take the B Complex with my multivitamin for a while until I can get some higher quality brand. Thank you so very much!

My son and I are vegetarians, so I know he'll need something as well. I'm not sure if his Poly-Vi-Flor is enough. Kind of scared to mess with that, though.

mrsD
05-07-2010, 01:44 PM
http://www.rxlist.com/poly-vi-flor-drug.htm

There doesn't appear to be any B12 in Poly Vi Flor.

Depending on the diet... eggs dairy, have some B12.

You should also check my Vit D thread... also being recommended for children as well (over certain ages either 1000IU or 2000IU now). Poly Vi Flor has the old amount.

http://neurotalk.psychcentral.com/showthread.php?t=115722&highlight=Vitamin

JoanB
05-08-2010, 04:34 PM
Hey mrsD, you said this:

And furthermore, what is very lame about the US, is that the LOWER end of the range is out of date, compared to other countries. Normal is considered 150-200 here and in Japan anything below 500 is abnormal.


And MelodyL (the overachiever :winky:) says that hers is 2000.

I'm not clear on exactly what number we're shooting for on the B12 level. When I first started my search for PN answers, I tested at +800 without supplementation. So is it correct to think that lack of B12 is not a contributing factor to my PN cause in my case? And if it's not, can getting my B12 higher still help?

Sorry if you've already gone over this...if I missed it, you can give me some study hall detentions if you want.:)

mrsD
05-08-2010, 05:14 PM
Sometimes I wish Rose were here. She was our specialist on this subject from 1999 onward.

Her thought, which I read many times, was that people vary, and some need more than others. 800 may be enough for many people. But the logic of it all says, if you have symptoms, then maybe you need more than the average. So with time I've sort of come to the conclusion that perhaps the target should be 1000 or more. People with symptoms just are not "normal".

Because B12 is not really toxic, we can be liberal with it. Also it is not expensive either. So if you raise your levels to 2000, ( most tests don't go higher than that--because of the instrumentation limits), and you get BETTER...then that is your answer.
If you don't change at that level, then nothing is lost and you can discontinue. I'd stay high for some time, at least 6 mos to a year, and then you can decide to no longer do it, if there is no improvement.

There are not many supplements that you can do this with. B12 is rather easy to manage. This affords some leeway in making the decision.

MelodyL
05-08-2010, 05:27 PM
Hey mrsD, you said this:



And MelodyL (the overachiever :winky:) says that hers is 2000.

I'm not clear on exactly what number we're shooting for on the B12 level. When I first started my search for PN answers, I tested at +800 without supplementation. So is it correct to think that lack of B12 is not a contributing factor to my PN cause in my case? And if it's not, can getting my B12 higher still help?

Sorry if you've already gone over this...if I missed it, you can give me some study hall detentions if you want.:)


Hi. Just wanted to add my two cents.

I went on Methyl B-12 because I had gone to my podiatrist and he used some vibrating gadget on my toes after he cut the nails.

Well!!!!! I actually almost kicked that man. My toes were vibrating like CRAZY!!

And he was going : 'Good , good, you have feeling, that's good"

I'm looking at him like he was crazy. I said 'what on earth are you babbling about, you did this to me, are you nuts, my feet are TINGLING."

He then said "yeah, but you have FEELING".

Let me tell you, I NEVER WANT THAT FEELING EVER AGAIN. It lasted all day. I immediately went to the store to buy Methyl B-12 (because I knew all about it from going on these boards).

Couldn't find it anywhere. And any doctor I told this too, completely pooh poohed my taking Methyl B-12.

I finally went online and began taking it. And the funny thing, is a few days later I dropped a bottle of soda on my foot AND THE BUZZING almost drove me nuts.

I said "this is what Alan lives with???"

As soon as the Methyl B-12 came (I had initally bought the 1000) At least this is what I remember. And I began taking it . I knew within a week that I had to up the dose.

The results were amazing.

Now I already knew I had (what the docs at Cornell told me ), the beginning of neuropathy in the tips of my toes. No pain, no nothing, just a bit numb when theydid the filament test on the tips of my toes when I was in the Accord diabetes protocol at Cornell.

So flash forward a while and the podiatrist is using this tool and I jump out of the chair. (I will never forget this as long as I live).

So I've been on Methyl B-12 for about 2 years now. Could even be more. I have no idea. I don't care either.

I have complete feeling in my feet, and even better, when the podiatrist does my feet, I let him use that vibrating tool and I didn't jump out of the chair. Yeah, it tickled but I could stand it.

So my nerves on not HYPER SENSITIVE.

Thank god for Methyl B-12, Rose, and our lovely Mrs. D.

And right now, here in Brooklyn, NY, we are probably going to be having a hurricane because the wind outside is blowing everything into my window and around my kitchen.

This is happening in MAY??
lol

Melody

JoanB
05-08-2010, 06:37 PM
Thanks to mrsD and Melody...I have been taking B12 half-heartedly, but it's the cyco-whatchamahoozits because I bought a big jar before I knew the difference. I've mostly been focused on the vitamin D because I did test low on that. But you've convinced me--will get some methyl tomorrow.

And put some rocks in your pockets Mel...it's been blowing like the devil here in Pittsburgh since the wee hours this morning and still is as I type, so you'll probably be getting it until tomorrow morning at least.

MelodyL
05-08-2010, 07:45 PM
Thanks to mrsD and Melody...I have been taking B12 half-heartedly, but it's the cyco-whatchamahoozits because I bought a big jar before I knew the difference. I've mostly been focused on the vitamin D because I did test low on that. But you've convinced me--will get some methyl tomorrow.

And put some rocks in your pockets Mel...it's been blowing like the devil here in Pittsburgh since the wee hours this morning and still is as I type, so you'll probably be getting it until tomorrow morning at least.

Rocks in my pockets IT IS!!

I'll bet I'll get blown down the block tomorrow morning when I go out for my usual Dunkin run.

lol
mel

darlindeb25
05-09-2010, 06:53 AM
Yeah, it's really windy out here on the island too. I wish the pollen would all blow away!!!:p They are promising winds of 25-30 mph with gusts up to 40.

Joan, it is true that methycobalamin is best, but some people do well on cynacobalamin too. I wouldn't toss it, well, with money as tight as it is, I wouldn't.:eek:

I take 5000mcg of Jarrow Methycobalamin, have for about 3 yrs I think. My B12 level was 1700 in Jan and my neuro told me to stay with this dose.

I finally figured out that I am super sensitive and had been getting glutened by foods I trusted to be GF simply because they were labeled as so. Now that I have stopped eating any processed foods I am finally losing weight. So come June when I see my neuro again, I am hoping my vitamin numbers are going up where they belong now..we will see.

JoanB
05-09-2010, 08:45 AM
Joan, it is true that methycobalamin is best, but some people do well on cynacobalamin too. I wouldn't toss it, well, with money as tight as it is, I wouldn't.:eek:

I take 5000mcg of Jarrow Methycobalamin, have for about 3 yrs I think. My B12 level was 1700 in Jan and my neuro told me to stay with this dose.

Booyah! Count me in the B12 club!

I finally figured out that I am super sensitive and had been getting glutened by foods I trusted to be GF simply because they were labeled as so. .

Deb, you invented a new verb: glutened! At least I think it's new. I like it!

Now that I have stopped eating any processed foods I am finally losing weight. So come June when I see my neuro again, I am hoping my vitamin numbers are going up where they belong now..we will see.

My problem is that ever since I started losing weight for no reason about a year ago, I can get away with eating any old $#!+ that I want without Mr. Scale punishing me. I have to get back to the way I used to before I became one of those people I always hated.:rolleyes:

echoes long ago
05-09-2010, 12:43 PM
Hey mrsD, you said this:



And MelodyL (the overachiever :winky:) says that hers is 2000.

I'm not clear on exactly what number we're shooting for on the B12 level. When I first started my search for PN answers, I tested at +800 without supplementation. So is it correct to think that lack of B12 is not a contributing factor to my PN cause in my case? And if it's not, can getting my B12 higher still help?

Sorry if you've already gone over this...if I missed it, you can give me some study hall detentions if you want.:)

Rose used to say that the amount that shows up in your blood test is not the same as what you are actually absorbing into your tissues, so from what i have gathered it wouldnt hurt to give it a go for a while and see if it helps. Besides we are all very different and what may be enough for me may not be enough for you depending on how much damage needs to be repaired.

darlindeb25
05-09-2010, 06:52 PM
Deb, you invented a new verb: glutened! At least I think it's new. I like it!

:DWell, it's not a new verb, it's one we celiac's use all the time. When we eat gluten, it's poison to us, but we call it being "glutened"! It definitely is not a fun verb!!!

:hug:

fabdou
06-16-2010, 12:47 PM
Mrs. D, my daughter has been diagnosed with New Daily Persistent Headache. We have tried many meds without effect. Are you aware of any vitamin deficiencies that could contribute to this problem or of any vitamins or supplements that might be effective in treating this terrible headache

mrsD
06-16-2010, 02:15 PM
No I am sorry fabdou....

Treatment of persistent headache is a specialty and should be diagnosed carefully to rule out pressure changes in the CNS fluid of the head.

People with chronic pain in general are showing up low in Vit D tests. So you could have that done, as well as B12 and B6 at the same time. Vit D should be 50-80ng and B12 should be 400 or above. (doctors still use antiquated ranges and tell patients they are "normal", when in fact they are really LOW-- so keep this in mind and get your results).

Some things in the past that have been suggested are feverfew extract and riboflavin Vit B2. It wouldn't hurt to try these if you haven't already. Magnesium treatment does help some patients with migraine. I have a magnesium thread here:
http://neurotalk.psychcentral.com/thread1138.html

I'd consider a food intolerance too. Gluten and dairy are the biggest factors in neurological illnesses.

4aulkner
06-19-2010, 05:17 AM
Rose used to say that the amount that shows up in your blood test is not the same as what you are actually absorbing into your tissues, so from what i have gathered it wouldnt hurt to give it a go for a while and see if it helps. Besides we are all very different and what may be enough for me may not be enough for you depending on how much damage needs to be repaired.

So right! I've just had bloodwork done and all my B numbers were fine. At the same time, I had some kind of urine testing (you know - fill all the little vials and send them off in a freezer box to, in this case, Genova Diagnostics) and my vitamin B levels were awful. Evidently what's in my blood isn't doing much for my tissues -- or my body. (What? It's just hanging around? Skating on by? The nerve!) My naturopath is trebling my doses of several things. Cannot wait to feel better!!

What I wish someone could explain to me is how the lack can show up in urine and not in blood testing. . .

Marcia

mrsD
06-19-2010, 06:55 AM
If you are not converting some of the Bs to active form, they may show up in the serum as high.

B6 must be activated to P5P. (riboflavin is used for this conversion)
B12 is activated to methylcobalamin
Folic acid is converted to methylfolate.

There are genetic errors that prevent this conversion. You inherit them. They are called MTHFR polymorphisms and I explain it earlier on in this thread.

A doctor came on to another thread here about them recently...
take a look: I have read 10% of people have this, but he claims new info at 30%:
http://neurotalk.psychcentral.com/post663808-20.html

Metanx is an RX vitamin with all 3 activated B's in it. That is what that thread is discussing...generic and OTC versions.

ctyankee3
07-10-2010, 11:01 AM
I have pn from schwanomas removed from my spinal cord at L4-5/S-1. I have a bad left leg and foot.

My endocrinologist did a workup a week ago of blood work and my folate level was over 20 and considered high. I have been trying to find out what this means.

Any help would be greatly appreciated.

CTYankee3

mrsD
07-10-2010, 12:06 PM
High folate accompanies low B12. It may also be high if you are not converting folic acid in the body to its active form,
methylfolate. The folic acid builds up therefore. And your tissues may be starved for the active form.

Getting a homocysteine test will reveal more.
People with the genetic failure MTHFR polymorphisms cannot make active vitamins for the body to use, from those taken in pill form or from enriched foods. Many foods today are enriched with folic acid, so that may read high in some people.
People with the MTHFR gene polymorphism typically develop elevated homocysteine as they age.

Nervous
07-15-2010, 12:28 AM
Just read the B12 thread. Thanks to all for this very important discussion.

Question re this statement: "Low B12 actually damages nerves, the myelin that insulates them is maintained by B12 and other nutrients. Myelin damage also shows up as numbness/tingling and peripheral nerve pain."

I have small fiber neuropathy. As I understand it, the nerves affected are not myelinated. Will B12 improve my condition?

Thanks.

darlindeb25
07-15-2010, 06:46 AM
Mrs D will come along with the technical info for you, but I can say, yes it does help. I have small fiber/sensory neuropathy, and I have been taking B12 for 6 yrs. It does help, greatly slowed the progression of my neuropathy, then started healing in some areas.

mrsD
07-15-2010, 08:49 AM
Yes, B12 has other functions too in the cell itself.

This link explains this complex molecule pretty well.
http://en.wikipedia.org/wiki/Vitamin_B12

scroll down to "functions", and you will see other uses of B12 besides maintaining the myelin sheath (which is composed of fatty acids).

I often find it amazing that such a tiny amount of this one substance can affect us so globally!

Nervous
07-15-2010, 09:51 AM
Thanks for these responses.

Now, I have a concern about folate/folic acid. For many years, I have been taking a reputable multiple vitamin with 1000 mcg of "Folate (= Folic Acid +Folacin)." After finding this site, I added in 800 mcg Folic Acid (Solgar brand). Is is dangerous for me to be taking folic acid in such high doses?

mrsD
07-15-2010, 09:59 AM
There is a thread where I bring this new problem up...and a doctor came on with additional information:

http://neurotalk.psychcentral.com/showthread.php?t=114302&highlight=Metanx

It is long, but I think worth reading carefully.

Until about a year or so ago, the common thought was folate was good for everyone. Then young women started using high dose folate for preventing spina bifida in their babies. Then, some new data emerged that some of these high dose patients were showing up with colon cancer at a young age.

According to the doctor who comes on that Metanx thread, it is the "unactivated" folate that may be to blame. But still the research is not firm on that.

I stopped recommending high dose folate over a year ago, because the subject remains murky.

Folate has been pushed and even added to US foods, in the hopes of reducing heart disease/stroke which may be caused by elevated homocysteine levels.

I would keep your total folate consumption down to 800mcg a day, until this data clarifies.

Methylfolate is available now thru Solgar at 400 and 800mcg doses. It was off the market for a while, because Merck, who holds the patent for making it, wanted to control it and make more $$ off the RX versions. But it now has returned to OTC status. So if anyone is really concerned, using it instead of folic acid regular type, may be a better intervention. But there are no guarantees yet.

Nervous
07-15-2010, 10:03 AM
Then, some new data emerged that some of these high dose patients were showing up with colon cancer at a young age.




I read this on this site. It is why I raised the question.

Thanks again.

mrsD
09-25-2010, 06:46 AM
Back in 1999 we were all on the "older format" at BT, some of us that is...;)

rose appeared there with her experience with low B12, and she used to provide the AMA Journal paper by Dr. Chris Snow MD which appeared that year and was a turning point for medicine in this country, for interpreting serum B12 levels. For a while this paper was only available to members of the AMA and it was not online. Rose sent me that article thru the mail, back then as she did for many other posters.

Well, that article is now available online and here is the link to it:
http://archinte.ama-assn.org/cgi/content/full/159/12/1289
As discussed above, patients with Cbl deficiency may have overt neurologic disease in the absence of hematologic findings. Patients with neurologic symptoms and signs and a normal complete blood cell count require a modified diagnostic approach because of several considerations. First, folate deficiency is an unlikely cause of neurologic disease. Second, the neurologic disease of Cbl deficiency may be irreversible if treatment is withheld or delayed; because Cbl therapy is nontoxic, the risk-benefit ratio favors treatment in questionable cases. Finally, an apparent response to therapy (or lack of response to therapy) is less definitive in ruling in or ruling out Cbl deficiency than is the serial measurement of abnormal initial hematologic parameters. Even in patients with a normal complete blood cell count, it may be worthwhile to monitor the MCV after treatment because a significant decline within the normal range provides additional evidence of Cbl deficiency.

An approach to the diagnosis of Cbl deficiency in patients with isolated neurologic findings is outlined in Figure 4. Relevant to the development of this algorithm is a study23 of 419 patients with Cbl deficiency, 12 of whom had serum Cbl levels greater than 148 pmol/L (200 pg/mL). All 12 had elevated levels of serum Hcy and serum MMA. Five patients with normal serum Cbl levels had neurologic disease, and 1 of the 5 had a level greater than 221 pmol/L (300 pg/mL). All 5 patients had a clinical neurologic response to Cbl therapy and normalization of metabolite levels.
(note: picomoles is a European and other country lab report, and we use pg/ml in US-- this link explains how to convert them:
http://neurotalk.psychcentral.com/post627358-43.html )

This article is often quoted in the bibliographies of other papers now, so it is nice to have it to refer to. Some of the information and graphs in it were picked up by AAFP, in their online reference for doctors, in 2003. I gave that link in the first post on this thread, so I won't repeat it here.

Over the years the formulas for oral B12 have changed. I have yet to see the new enhanced absorption one yet, but I understand it is coming. Methyl B12 (bioactive form) oral is available now and it supercedes the cyano (which is not active and is synthetic) by far. Methyl B12 is also available by injection from compounding pharmacies and is mostly used by the autism community, but any doctor can order it.

Also parallel discoveries in pharmaceutical dosage forms and bioavailability about microgram absorption of drugs failing when food is present in the GI tract (esp. fiber) have not yet trickled over to oral B12 recommendations, we often see in papers.
Thyroid and digoxin have been found to not be absorbed when food is present, so now carry the recommendation to take on an empty stomach. Since the oral forms of B12 are in micrograms also, and since they are passively absorbed orally, this recommendation I think should apply to them. Testing for intrinsic factor (the Schilling's test) has been dropped by many labs today. So many doctors and patients have no idea if they have working intrinsic factor or not. The antibody test to parietal cells is sometimes used but it is expensive and often not done either. When intrinsic factor is working, oral B12 will be absorbed better. But when people present with significant neurological symptoms one has to wonder if intrinsic factor is NOT working as it should. So expecting only passive absorption of B12 in the intestine is what we have to go on.
The AAFP link has some nice color illustrations to show how B12 is absorbed ideally, so please check that out.

MelodyL
09-25-2010, 09:04 AM
I have a question about Colitis. I'm putting it here because this is about vitamins and minerals, etc.

If a 31 year old woman has colitis, and everything she eats goes right through her, shouldn't she be taking SOME SORT OF VITAMIN SUPPLMENT, B-12, Omegas, I mean, shouldn't a person who goes to the bathroom all day long, well doesn't that imply that she is NOT getting any nutrition whatsoever.

This person weighs about 110 lbs, is tall, very very thin, smokes all day long and drinks more than one should drink.

So isn't this a time bomb waiting to go off?

I know that a regular person doesn't quite get all their nutrition from food, but wouldn't a person with colitis have to be especially diligent about supplementation?

I've mentioned this to her family. They think I'm nuts.

thanks much

Mel

mrsD
09-25-2010, 09:17 AM
She should get tested to see what is going on. B12 is absorbed before the colon. She might be getting more than you think. However, potassium and magnesium may lost more thru diarrhea. Crohn's is more damaging for malabsorption.

It is hard to say, she should be getting counseling from a dietician at the doctor's.

mrsD

I have a question about Colitis. I'm putting it here because this is about vitamins and minerals, etc.

If a 31 year old woman has colitis, and everything she eats goes right through her, shouldn't she be taking SOME SORT OF VITAMIN SUPPLMENT, B-12, Omegas, I mean, shouldn't a person who goes to the bathroom all day long, well doesn't that imply that she is NOT getting any nutrition whatsoever.

This person weighs about 110 lbs, is tall, very very thin, smokes all day long and drinks more than one should drink.

So isn't this a time bomb waiting to go off?

I know that a regular person doesn't quite get all their nutrition from food, but wouldn't a person with colitis have to be especially diligent about supplementation?

I've mentioned this to her family. They think I'm nuts.

thanks much

Mel

MelodyL
09-25-2010, 09:38 AM
She should get tested to see what is going on. B12 is absorbed before the colon. She might be getting more than you think. However, potassium and magnesium may lost more thru diarrhea. Crohn's is more damaging for malabsorption.

It is hard to say, she should be getting counseling from a dietician at the doctor's.

mrsD

I hear you Mrs. D, but that's NOT GOING TO HAPPEN IN THIS LIFETIME.
Some people never listen and never learn (until they wind up in the hospital). So far, she's been very lucky. She hasn't been to a doctor in YEARS. Her whole family has a history of colon cancer and everyone else gets regular colonoscopies, etc. Not her. And she doesn't eat anything that contains B-12. She'll just eat any kind of fast food and then she'll go to the bathroom.

Thanks much for your information.

Melody

Mo02
11-06-2010, 07:34 PM
Hello,
I found this site yesterday. The information on this thread is amazing!!!
I will try and make my story as short as possible, even though I could go on forever!. I became ill in November of 2009. I was diagnosed with B12 deficiency in December of 2009. At that time my level was 86. I was immediately started with one 1000 mcg Cyanocobalamin injection a day for 5 days, followed by weekly shots until May. Since May I have been getting injections every 3 weeks. Life has been a rollercoaster, to say the least.
Last week I saw another doctor. A neurosurgeon. He diagnosed me as having (I hope I get it right) Subacute Spinal cord degeneration. In the past 11 plus months I have been seen by 9 neurologists, including the ones that I had seen during an 11 day hospital stay in August, have had countless tests done and now finally a diagnosis!
My B12 goes up and down with the highest being 600 on August 27th (after 5 consecutive days of shots). As of October 12th it was sitting at 284. I am due for another check the end of November. I have this feeling it will be below 284.
Questions I have........ should I be taking Methylcobalamin orally each day along with getting injections every 3 weeks?
The results of the MMA and Homocysteine tests would not be accurate if they were done after a run of daily shots for 5 days?
Why does my level not stay up?
My antiparietal cell antibody test came back positive ....... is that a positive for Pernicious Anemia? Some tell me no, some tell me yes.
I am forgetting alot of questions but will leave it at that for now.
I will continue reading more of this thread :)

MelodyL
11-06-2010, 08:55 PM
Hi, I'm sure one of our knowledgable B-12 experts will hop on board and give you lots of good info.

I can only tell you what I take. I take 5000 sublingually every day. My last level was 2000 and I gather it's much higher now. With absolutely no ill effects. My husband's level is over 3000. He has neuropathy. The Methyl B-12 helped MY neuropathy because I'm diabetic. It didn't do a thing for my husband, unfortunately.

I do not take cyano.I take straight Methyl B-12.

On an empty stomach. First thing when I wake up in the a.m.

Listen to the others who come here and then you can decide for yourself.

Melody

Mo02
11-06-2010, 10:32 PM
Thank you Melody!!
I look forward to as much info as I can get :)

mrsD
11-07-2010, 07:36 AM
Yes, I think you should aggressively take the oral. 5mg a day of the methyl on an empty stomach. Obviously the injections are not doing well for you.

In answer to your question about fluctuating levels I think 3 things.

1) Because the injection only lasts in the body for a very short time, getting them every 3 weeks before you are stable is not enough.
This link illustrates the rapid clearance of B12 in an experimental situation.
http://www.ncbi.nlm.nih.gov/pubmed/15730428


2) B12 is stored in the liver. So when you get that infrequent shot, the liver is sucking some of the brief blood levels.

3) There is an active transport system into the cerebrospinal fluid. I works better when the blood levels are HIGH, thereby a gradient of sorts helps get the B12 into the spinal cord and brain. When there is a low amount in the blood, the spinal cord has less to get it needs from. If you take a high dose DAILY, then you will get better serum levels, so your nervous system can heal better. About 10% of the oral dose is absorbed passively in the intestine and daily use will cover the short half life and provide a steady amount of B12 daily, instead of peaks and valleys.

Since B12 is non toxic taking the oral in high doses is not harmful. Just make sure it is on an empty stomach because food interferes with absorption, and you want as much as possible to be absorbed without intrinsic factor. The oral form is not expensive either. Luckily both factors work in your favor.

Once you have damage to the myelin in the spinal cord and brain, it will take a longer time to fix if that is even possible.
Using methylfolate and B6 would be helpful for remyelination, because they work in concert for repair.

Welcome to NeuroTalk.

Mo02
11-07-2010, 03:58 PM
Thank you MrsD for your response. Your are a wealth of knowledge which is so refreshing!
I have not read the link but have it bookmarked so will do so once I finish with this post.

I found sublingual MethylB12 in 1000mcg. I think I will check out a healthfood store that is close by to see if 5 mg is available. With sublingual tabs do they have to be taken under the tongue or can they just be swallowed for absorbtion?

You mentioned Methylfolate ....... I take 1 mg Folic Acid daily (because of low folate at the time of B12 def diagnosis). Is there is a difference between the two?
I also take 300 mg Ferrous Gluconate x3 daily because of low Ferritin, again found at the time of the B12 def diagnosis.
Just as a side note, I also take Synthroid daily for Hypothyroid.

Off I go to read the link :)

mrsD
11-07-2010, 06:56 PM
Most stores would not have the 5mg methyl version. It is easily available here www.iherb.com . Several affordable suppliers.
Puritan's Pride even has it now!

There is a genetic error that about 10% of people (and some believe may be higher incidence) that prevents people from activating both folic acid and B12. I have details of that earlier in this thread. (regular folic acid is not active in body).
It is called a MTHFR polymorphism. When people come here with vague neurological problems one has to wonder if they are part of that genetic failure.

Methylfolate is a suggestion, because regular folic acid fails in this genetic failure group. It is available OTC from Solgar at 800mcg and you can get it also at iherb. So if you tested low in folate, you might as well get the methylfolate too. It tends to be more expensive than the 5mg B12.

Mo02
11-08-2010, 02:08 PM
Hhmmmm.... I was just looking over some bloodwork reports I have. My last check of Ferritin and Folate were in February.

Ferritin ........ 7

Folate ........ >45

The Folate has been the same on my reports since finding out about the B12 def back in December. So my Folate was too high ?? I was reading it as low. I am confused with reading these reports :confused:

My next bloodwork will be the end of November. I will ask to get the Folate and Ferritin checked again.

mrsD
11-08-2010, 04:22 PM
Very low B12 is often accompanied by high folate readings.

MelodyL
11-08-2010, 10:14 PM
Hi Mrs. D.

A quick question from one of the members of the our Neuropathy Support Group. He phoned me today asking me about B-12. He knows what I take because we discuss it at the meetings. He has neuropathy. He also has Neurofibromatosis.

His B-12 level is 600. He then said "I know I have enough B-12 because I go in the sun quite a bit. I then corrected him on that assumption. Since he knows what I take he is thinking about taking it also. I don't think he knows his folate level. I'll ask him when I contact him. He said to me "I am on Triflex for cholesterol and Synthroid for Thyroid, can I still take the B-12? And how much folic acid should I take?

I told him "I have never heard of anyone have any ill effects from Methyl B-12, or if it has any contraindications, but just to be sure, I'll ask Mrs. D".

So I'm asking.

Thanks much

Melody

mrsD
11-09-2010, 06:10 AM
Are you sure about that drug? Triflex ??? Triflex is a glucosamine product for joints.

There is a TriCor for elevated triglycerides.

There is TriLipix....which is a statin Crestor mixed with Tricor.
Statins=neuropathy risk.

He has more problems than just B12 IMO. Most people get enough folic acid today in US because we have fortified foods that contain it. He should get tested.

First off this gentleman needs CoQ-10 because of the STATIN he takes. Also acetyl carnitine at least.

And yes, get a Vit D test.

He sounds rather confused, and statins contribute to that.
He needs to check Dr. Graveline's website,
www.spacedoc.net
Dr. Graveline lost his memory on Lipitor (STATIN) and wrote a book about it. "Lipitor, The Thief of Memory".

In regards to B12, some people with rather normal B12 levels, could have neuro issues. This is because people vary. It is less common than when their levels are lower, but it can happen.
Please, read that article I posted in this thread.
http://neurotalk.psychcentral.com/post698522-70.html

Mo02
11-09-2010, 06:22 PM
MrsD..... about the MethylB12 5000 mcg, you had mentioned Puritans Pride ?? I am not familiar with that. Is it a store?

Also, I was thinking, if my Folate was >45, which is high ........ why would the Neurologist prescribe 1000mcg Folic acid daily??

Referring back to one of my earlier questions about Pernicious Anemia..... having tested positive for antiparietal cell antibody means a diagnosis of PA??? Or are there more tests that go with it?

:)

MelodyL
11-09-2010, 10:36 PM
Are you sure about that drug? Triflex ??? Triflex is a glucosamine product for joints.

There is a TriCor for elevated triglycerides.

There is TriLipix....which is a statin Crestor mixed with Tricor.
Statins=neuropathy risk.

He has more problems than just B12 IMO. Most people get enough folic acid today in US because we have fortified foods that contain it. He should get tested.

First off this gentleman needs CoQ-10 because of the STATIN he takes. Also acetyl carnitine at least.

And yes, get a Vit D test.

He sounds rather confused, and statins contribute to that.
He needs to check Dr. Graveline's website,
www.spacedoc.net
Dr. Graveline lost his memory on Lipitor (STATIN) and wrote a book about it. "Lipitor, The Thief of Memory".

In regards to B12, some people with rather normal B12 levels, could have neuro issues. This is because people vary. It is less common than when their levels are lower, but it can happen.
Please, read that article I posted in this thread.
http://neurotalk.psychcentral.com/post698522-70.html

Hi Mrs. D. I have written to him to get the correct name of the meds he is taking. Thanks much. Melody
Next week is the Neuropathy Association monthly meeting.

MelodyL
11-11-2010, 12:51 PM
Mrs.

I was able to get the correct name of the medication that my friend is on. He only takes two meds. He is on 135 of the Trilipix (for cholesterol) and he takes synthroid for thyroid.

I asked him what his last B-12 level was and he said "Well 6 months ago it was 600. He has NEVER had his Vitamin D level tested (as far as he knows). And when I suggested that he get it tested he said "Well, I'm due to go in March for blood work and I can't go sooner because of the insurance co-pay.

So I gather he wants to know how much vitamin B-12 he should be taking, and how much Vitamin D3 he should be taking. At least until he gets another blood test done.

He takes no other meds at all. Nothing for neuropathy and nothing for Neurofibromatosis.

I just wanted to get you the exact information.

Thanks much

Mel

mrsD
11-11-2010, 12:56 PM
Without a D test, the recommendations today from doctors, specializing in D stuff is 2000IU D3 daily.

He could start the B12 aggressively at 5mg a day for 3 months, and then drop back to 1mg daily (on an empty stomach).

But it is that Crestor that is in the Trilipix that is worrisome.

That drug depletes CoQ-10 and he should be supplementing at least 300mg a day of that of a quality enhanced absorption type.
Also read my thread in the subforum about statins.

If he refuses to learn about it... then he should try adding acetyl carnitine to his CoQ-10 and hope for the best.

That statin in the Trilipix is highly problematic for someone already with neuropathy.

Feel the Burn
11-25-2010, 02:30 PM
mrsD, I looked mine up from last wek and it showed B12 at 331,, so I guess were talking low and what supplement should I take,,, I have SFN that is spreading quickly,,

mrsD
11-25-2010, 02:51 PM
5mg of oral methylcobalamin daily on an empty stomach.

This is because you have symptoms considerable.

I would get the Vit D tested too.

But other things may help you too:

Acetyl carnitine
Benfotiamine
Lipoic acid

All of these help with mitochondrial functions.

MelodyL
11-25-2010, 05:14 PM
Without a D test, the recommendations today from doctors, specializing in D stuff is 2000IU D3 daily.

He could start the B12 aggressively at 5mg a day for 3 months, and then drop back to 1mg daily (on an empty stomach).

But it is that Crestor that is in the Trilipix that is worrisome.

That drug depletes CoQ-10 and he should be supplementing at least 300mg a day of that of a quality enhanced absorption type.
Also read my thread in the subforum about statins.

If he refuses to learn about it... then he should try adding acetyl carnitine to his CoQ-10 and hope for the best.

That statin in the Trilipix is highly problematic for someone already with neuropathy.


Hi Mrs. D. Just wanted to update you on my friend from the Neuropathy PN Group. He has gone for a blood test and among what they are testing for is B-12 and Vitamin D.

So we shall find out when we find out!!!

thanks much

Melody

Feel the Burn
11-26-2010, 08:50 AM
Is Vitamin D availabe OTC ?,, I swear I am just coming apart daily,, every nerve in my body feels like a live wire,, the tremors are getting worse, but blood test show no increased SED rate,, CPK is in normal range, 99 on a 0-200 scale, I dont know what my D level is, it was low in the past, thank you mrs D,, your very knowledgeable

mrsD
11-26-2010, 09:06 AM
Yes, D3 is OTC... pick a capsule version, or liquid so it is absorbed better. (I don't think the dry ones are absorbed as well)

There are many many available now:
http://www.iherb.com/search?kw=d3#p=1&sr=0

If you know your D3 level, use 1000 IU / 10ng increase to figure out your dose. The research says most people can take 2000IU safely without a test. But if you don't get any sun at all, I'd start with the newer 5000IU daily.

Both hubby and I use the 5000IU in fall/winter/spring and none in summer.

drswami
11-27-2010, 04:03 AM
I am wondering what to make of these B-12 blood test results. All taken this year. None of the doctors i have seen have any idea. they all think the 2nd reading was a mistake, but i figure if i was taking 20,000 per day for three weeks it could well have been correct. Since the Nov 23 test i have started on 5000 a day again, on an empty stomach.

My main interest here is that even though I was consuming 1000mcg per day for the past six months, the level has dropped. Any insight would be much appreciated.

March 17............162 pg/ml
Started talking 20,000mcgs per day. sometimes without food

April 7 ................5297pg/ml
Took 1000mcg per day with food (a different brand)

June 2.................879pg/ml
Continued taking 1000mcg per day with food

November 23........849pg/ml
Started on 5000mcg per day again.

mrsD
11-27-2010, 09:16 AM
We had a poster here, and I have seen on the net a couple of times comments from a lab technician in the US that most testing places (at least here) cannot go up past 2000.

What may have happened to you is that when you started, with that 20mg daily, you flooded the serum, which then went to storage both in the liver and spinal fluid, and when that was normalized, your readings dropped. If you had depleted your liver and CNS you would have had symptoms and been in a bad way. It takes time to recover the levels in those two places.

Many informational sites say that our livers' if in good shape, can store enough B12 to last 5 yrs. This is because we evolved in an ice age where food was hard to get sometimes. Being hunter gatherers we had lean times and rich times.

drswami
11-28-2010, 05:11 PM
thanks mrs D.

what do you think of the fact that the level has dropped even though i have been taking 1000mcg's per day over the last six months?

does this mean that none of it is being absorbed.

a gastroenterologist i saw said it was too late to find out why my b-12 count was initially so low, because i had already started supplementation.

is he correct?

mrsD
11-28-2010, 06:53 PM
Yes, basically if you get that low there is only one reason...
failure of intrinsic factor.

Readings in the 800's are not that bad. Sometimes the real answer eludes us. Just do what you need to do. I think 5mg daily is plenty, for most people.

See what happens over 3 or so months.

nanmiya
12-10-2010, 11:04 PM
Hello, no one seems to have posted here for a while, but I'd like to ask a question here as it seems to be the appropriate spot.
My Primary is going to test me for my B12 and D levels when I have my physical in January. (about 1 month from now.) I have been taking a B complex and multivitamin as well as a few other supplements for two years, and D3 since this summer, and it does not seem to relieve symptoms of peripheral neuropathy. I am wondering if the supplements can mask a b12 deficiency when I am tested? I read somewhere that Folate in the supplements can mask anemia while neuropathy progresses. Should I stop taking the supplements in the month leading up to the test? Or should I just continue and thereby know whether I am absorbing the vitamins or not?

mrsD
12-11-2010, 07:42 AM
Hello, no one seems to have posted here for a while, but I'd like to ask a question here as it seems to be the appropriate spot.
My Primary is going to test me for my B12 and D levels when I have my physical in January. (about 1 month from now.) I have been taking a B complex and multivitamin as well as a few other supplements for two years, and D3 since this summer, and it does not seem to relieve symptoms of peripheral neuropathy. I am wondering if the supplements can mask a b12 deficiency when I am tested? I read somewhere that Folate in the supplements can mask anemia while neuropathy progresses. Should I stop taking the supplements in the month leading up to the test? Or should I just continue and thereby know whether I am absorbing the vitamins or not?

Most B complexes have B12 in them. A very small amount. If you have intact intrinsic factor, you will absorb this B12. If you do not (due to autoimmune disease or genetic failure) the B12 in it will not be high enough to be passively absorbed (like other things are). In cases like this where folate is eaten (fortified foods) or in vitamins and B12 is low, there can be warning signs in the blood work. An elevated MCV may be present before anemia starts. From what I have read, one does not have to have frank anemia to be low in B12.

Some of the Bcomplex is very rapidly removed from the body thru the urine. Most people can smell this and see a greenish yellow color to show the complex was "absorbed" from the GI tract. However, B12 does not give this sign. Regular Thiamine, B2, and B6 can do this however. Being absorbed is not the same as being "utilized" by the body once absorbed. The cyano form present in most vitamins, has to be converted and methylated to active methylcobalamin before being able to work. Some people cannot methylate because they lack genetic capability to do so. This is called the MTHFR mutation, and when this is present (about 10% of people), folate and B12 cannot work for you.

So the bottom line is -- I'd stop the vitamins a week before the testing. Since they appear to not be working for you anyway, you should not experience any changes.

I think you can stop your B-complex a week before the testing.
If you are absorbing the B12 because your intrinsic factor is working, your blood levels will not change much. During testing one does not want the immediate amounts of this vitamin showing up temporarily in the blood from a supplement (or injection) to confound the results.

It is true in very low B12 patients, the folate will mask anemia.
Neurological symptoms may be due to low B12, or other triggers. Doctors who use "anemia" as a sign of low B12 miss about 80% of the cases that have neuro problems without showing this symptom. Texts that they had in school which are old, use that criterion. This paper, written in 1999 , suggests that even people with fairly normal B12 levels there can be neurological problems that require more than normal intake:
http://neurotalk.psychcentral.com/post698522-70.html

nanmiya
12-12-2010, 11:58 AM
Mrs D, Thank you so much for your fast response with such clear explanations!
I appreciate your advice and will stop B12 a week ahead of the blood draw as this makes a lot of sense now. Thank you also for the link. I am going to go read it right now.

mrsD
03-08-2011, 10:41 AM
I took my new kitten to the cat specialist vet the other day, in preparation for a spay procedure later in the month.

While I was there an owner came in to pick up B12 injections for her cat. I was very curious, and we got to talking.
Her cat is 14 yrs old and has pancreatitis. She picked up 6 doses for $12.

I asked the tech later about this, and she said that foods high in carbohydrate tend to inflame the intestines of cats, causing B12 deficiencies! (sounds like gluten intolerance!) So this practice uses B12 injections commonly for digestive issues! So in other words they discourage kibble there, and suggest only wet food, and food you may cook for your cat!

I was very interested in this! It illustrates how diet, and environment can even impact your pet!

brainedout
03-09-2011, 05:54 AM
My B12 score was 140 pg/ML when I got tested in January (thanks for prompting me, mrsD!). I recently started on B12 shots; my GP recommended three shots a weeks over 8 weeks initially. She thinks I might have a problem with intrinsic factor and I also take meds for my GERD which can hinder absorption of B12 (thanks again, mrs D!). Now, because of my GERD, I can't take too much citrus fruits or vitamin C orally as my stomach will bloat. I'm thinking of getting vitamin C shots once a week at the same time as my B12 shots. My GP says she can administer them intravenously and simultaneously. My question is: can vitamin B12 interact with vitamin C negatively if administered this way?

mrsD
03-09-2011, 06:40 AM
Well, when you take your oral B12, you need to take it alone on an empty stomach.

As far as Vit C goes, try the Ester C. It doesn't affect the stomach the same way as the plain regular does.

140 is really low. I hope you do 5mg of methylcobalamin for at least 3 months daily. When you are so low, the levels in your spinal cord and brain go way down too!

You can get good levels with oral if you do it wisely.
The shots are not methyl form either.

brainedout
03-09-2011, 07:16 AM
Thanks for the prompt reply, mrsD.

My B12 shots are methylcobalamin. I'm still waiting for my Jarrow Formulas 5000 mcg to arrive as I'm currently working in a developing country with a rather bad rep for credit card fraud and iHerb has had to do some verification first hence the delay. They do deliver internationally though and you would have no problems if you were living in a developed country.

mrsD
03-09-2011, 07:21 AM
Good... I'd stick with methyl B12 because you don't really know what is causing your problem. Maybe you have that MTHFR genetic error, which fails to methylate cobalamin and activate it.

I'd avoid cyanocobalamin because you just don't know why you are so low, and there has to be a reason.

Nervous
03-09-2011, 01:19 PM
Well, when you take your oral B12, you need to take it alone on an empty stomach.


Just to be clear: Are you saying that you need to take B12 on an empty stomach with no other supplements? Or is it alright to take B12 with other supplements that need to be taken on an empty stomach?

I am currently taking B12 and Acetyl L-Carnitine on an empty stomach at the same time.

Thanks!

mrsD
03-09-2011, 01:28 PM
If the supplements are fiber containing... I'd not take them.

If they dissolve well, it is okay. Fiber specifically absorbs the B12 like a sponge and prevents absorption.

Calcium and magnesium are also suspect because some studies show they interfere with thyroid hormone. Calcium is divalent and tends to complex things into insoluble form...so I don't know if it would do the same to the B12. Until we get that new promised enhanced absorbable one I think being very careful is best. If you have intact intrinsic factor, this situation is less critical as the intrinsic factor will combine with the B12 in the stomach and enable absorption of it. But when people come here with LOW test results one has to assume that things are not working well for some reason. So prudence should be practiced for success. Now if you take your B12 a specific way and get tested in 6mos and show good levels, then that is the way for YOU... testing is the only way to show what is working the best for you.

For example my doctor expected much higher Vit D levels for me, based on my intake. And they were not there! (for whatever reason). Testing revealed that.

mymorgy
03-10-2011, 12:00 PM
i have pernicious anemia and have been taking b12 shots. I decided to start taking sublingual b12 tablets. I just ordered 1000 mg....is that okay? I plan to take them every day and then be tested in november
bobby

mrsD
03-10-2011, 01:29 PM
1000mcg is low for a seriously pernicious patient.

If you hadn't ordered them already, I'd suggest 5000 to start daily. This is of the activated methylcobalamin type for best results.

Also you should take that on an empty stomach. Under the tongue is not necessary, but food will impair absorption.

Why don't you start at 2 tablets daily.

mymorgy
03-10-2011, 01:49 PM
i already ordered the 1000 and just looked at iherb and only saw 3000 mg and no 5000...ugh...do you mean take 2 1000 a day?
bobby

mrsD
03-10-2011, 02:01 PM
Yes, take 2 a day for a while.

Ideally it would be 5000mcg/day for 3 months or until your blood work comes up.

Only about 10% gets absorbed you know.

mymorgy
03-10-2011, 03:23 PM
thank you so much
bobby

mymorgy
03-12-2011, 07:55 AM
I ordered 5000 mg from vitacost. thank you again
bobby

brainedout
03-16-2011, 07:21 AM
I'd suggest 5000 to start daily. This is of the activated methylcobalamin type for best results.

Also you should take that on an empty stomach. Under the tongue is not necessary, but food will impair absorption.

My Jarrow Formulas methyl B12 arrived yesterday (yay!) and I've started taking it. I suck on it but I find it makes my tongue a little sore. Any suggestions, mrsD?

Also, what's the difference between methyl B12 and the dibencozide formula? I remember you writing about it somewhere; I'm a little lazy to look for it. :D

mrsD
03-16-2011, 07:33 AM
You can chew it up and swallow... it will be absorbed about 10% in the small intestine.

Just make sure there is no food around...so take it first thing in the morning, and wait an hour or so for best results.

I don't believe much is absorbed from under the tongue. That is an old prep, and still hangs around.

brainedout
03-16-2011, 08:14 AM
One misconception doctors still have is that anemia must be present to have a real deficiency. This has been shown in papers to not be the case. Sometimes one blood test will hint at low B12 before anemia becomes severe, and that is MCV.
But many people can be low and not anemic.

This is an important point. Mean corpuscular volume (MCV) is a measurement of the average size of your red blood cells (RBCs). The MCV is elevated when your RBCs are larger than normal (macrocytic), for example in people with vitamin B12 deficiency. My MCV has been on the high side during my last three physicals and only the doctor during my last physical noticed this, retrospectively after seeing my very low B12 count. I'm not anaemic but I do have neurological issues - my consistently elevated MCV should have been a red flag given my neurological issues.

MCV is a test which is routinely done as part of your CBC (complete blood count) and if the number is too high or too low, it is an indication that further testing might be required. When the MCV is decreased, your RBCs are smaller than normal (microcytic) as is seen in iron deficiency anemia or thalassemias.

veggie
03-20-2011, 04:09 PM
I found this post through searching the internet and have a couple of questions:

Can someone with a b 12 serum level of 550 experience symptoms?
I am a vegetarian and over the last year or two year I have been tired (kind of zoned out like my body is disconnected from my brain), muscle twitches, stiff neck and shoulders, vibrating/tingling in my hands, nervous easily)

In the beginning of November after a very stressful time in October I began to have stomach problems (nausea, burning stomach, burping, throat tightness). The doctor diagnosed me with gerd. I tried to explain that I had never had stomach problems in my life. He prescribed prilosec, but it did not do me any good. I was then tested for h. pylori but that came back negative. Additional blood work showed that I was not anemic or diabetic. My MCV is at 94 (I looked back at old blood work and it looks like my MCV is something that continues to go up). During this same time, I also began to have bad nightmares where I sit straight up and/or, breathing heavy, heart racing absolutely in a state of panic.

Out of desperation after coming across an article that mentioned GI problems with b12 def. I asked to be tested this month. I was told the 550 was normal. Now for my second question in regard to the test. Because my stomach has been so bad, my diet has changed drastically (starting in Nov). I began drinking more milk, eating chicken noodle soup 3 to 4 times a week (trying to avoid the chicken, but I know I am eating some of it), eating 3 or so slices of multi-grain bread fortified with b12 during the day because my stomach worse when it is empty.) Could this change in diet, have affected the blood test results since it does not reflect my state at the time when all of these symptoms developed?

Any insight would be greatly appreciated.

MelodyL
03-20-2011, 06:16 PM
I found this post through searching the internet and have a couple of questions:

Can someone with a b 12 serum level of 550 experience symptoms?
I am a vegetarian and over the last year or two year I have been tired (kind of zoned out like my body is disconnected from my brain), muscle twitches, stiff neck and shoulders, vibrating/tingling in my hands, nervous easily)

In the beginning of November after a very stressful time in October I began to have stomach problems (nausea, burning stomach, burping, throat tightness). The doctor diagnosed me with gerd. I tried to explain that I had never had stomach problems in my life. He prescribed prilosec, but it did not do me any good. I was then tested for h. pylori but that came back negative. Additional blood work showed that I was not anemic or diabetic. My MCV is at 94 (I looked back at old blood work and it looks like my MCV is something that continues to go up). During this same time, I also began to have bad nightmares where I sit straight up and/or, breathing heavy, heart racing absolutely in a state of panic.

Out of desperation after coming across an article that mentioned GI problems with b12 def. I asked to be tested this month. I was told the 550 was normal. Now for my second question in regard to the test. Because my stomach has been so bad, my diet has changed drastically (starting in Nov). I began drinking more milk, eating chicken noodle soup 3 to 4 times a week (trying to avoid the chicken, but I know I am eating some of it), eating 3 or so slices of multi-grain bread fortified with b12 during the day because my stomach worse when it is empty.) Could this change in diet, have affected the blood test results since it does not reflect my state at the time when all of these symptoms developed?

Any insight would be greatly appreciated.


Hi, My name is Melody. your B-12 level is TOO low. Mine is 2000. Doctors do not know anything about nutrition. They practice medicine.

I can only advise you on the one way of eating that benefited my life. I turned to sprouting. Go on the internet and google "benefit of sprouting".

You're a vegetarian so you are perfect for this food. It is GREAT for people with sensitive stomachs. I sprout broccoli (no gas by the way), alfalfa, fenugreek and radish sprouts).

I have zero gerd, stomach problems. I go to the bathroom every day. It's the best thing I ever did.

Stop with the chicken noodle soup. Stop with anything processed.

You want to put live, good stuff in your body.

That is however if you are SERIOUS about your health.

I was and I am.

Melody

mrsD
03-20-2011, 06:36 PM
Yes it is possible but not common to have neuro symptoms with a 550 reading. In this thread is a copy of Dr. Snow's comments on neurological symptoms with B12 levels that appear normal.

So look back a few pages to that entry.

Vegetarians can be low in other things too. Zinc is one, and so is the amino acid methionine.

However, eating beans and other veggies can give good levels of magnesium.

Potassium however, could be low, and you can be tested for this.
Meat is a main form of potassium in most diets and vegetarians miss that.

I'd get tested for Vit D3. Low levels of this can create problems, and is quite common.

An elevated MCV is often one sign that B12 may be low. But that is not cast in stone either.

You may also want to look at gluten intolerance. This can cause neuro symptoms too. And you may be eating alot of it on your diet.

veggie
03-20-2011, 06:46 PM
Yes it is possible but not common to have neuro symptoms with a 550 reading. In this thread is a copy of Dr. Snow's comments on neurological symptoms with B12 levels that appear normal.

So look back a few pages to that entry.

Vegetarians can be low in other things too. Zinc is one, and so is the amino acid methionine.

However, eating beans and other veggies can give good levels of magnesium.

Potassium however, could be low, and you can be tested for this.
Meat is a main form of potassium in most diets and vegetarians miss that.

I'd get tested for Vit D3. Low levels of this can create problems, and is quite common.

An elevated MCV is often one sign that B12 may be low. But that is not cast in stone either.

You may also want to look at gluten intolerance. This can cause neuro symptoms too. And you may be eating alot of it on your diet.

Ok. Thanks. My main problem is the tiredness and now the stomach problems that have basically just appeared over night after that stressful experience. I was hoping they would go away, but they just seem to continue to hang around.

My potassium was tested and it is 3.7 with a range of 3.3 to 5.0.

Some others:
Calcium is 9.3 with a range of 8.6 to 10.5. Protein is 6.9 with a range of 6.3 to 8.3.

MelodyL
03-20-2011, 07:40 PM
Ok. Thanks. My main problem is the tiredness and now the stomach problems that have basically just appeared over night after that stressful experience. I was hoping they would go away, but they just seem to continue to hang around.

My potassium was tested and it is 3.7 with a range of 3.3 to 5.0.

Some others:
Calcium is 9.3 with a range of 8.6 to 10.5. Protein is 6.9 with a range of 6.3 to 8.3.

Hi, me again.

If you take Methyl B-12 it just might perk you up a bit. I have two friends who were always tired and their B-12 levels were in your range. I told them what I take. I told them where I got it and they began taking it also. You should see the change in them. One of them was slightly anemic also. Even taking iron didn't help her.

She's a new person now that she is taking Methyl B-12.

It gets confusing I know with all these vitamins and supplements, etc. Mrs. D. knows her stuff.

That's how I learned what I learned. By coming on these forums and reading.

Changed my life BIG TIME.

I wish you well.

Melody

veggie
03-20-2011, 07:51 PM
Hi, me again.

If you take Methyl B-12 it just might perk you up a bit. I have two friends who were always tired and their B-12 levels were in your range. I told them what I take. I told them where I got it and they began taking it also. You should see the change in them. One of them was slightly anemic also. Even taking iron didn't help her.

She's a new person now that she is taking Methyl B-12.

It gets confusing I know with all these vitamins and supplements, etc. Mrs. D. knows her stuff.

That's how I learned what I learned. By coming on these forums and reading.

Changed my life BIG TIME.

I wish you well.

Melody

Thanks so much for your help. Yes it is confusing. If anything, maybe I better not let the b12 drop lower since I just read:
"lower limit in Japan and some European countries is 500-550 pg/mL and is based on the level which causes mental manifestations such as dementia and memory loss."

Also I am not sure about potassium. Some information says 3.7 is ok and some say that is too low. I am interested in knowing especially when I saw the symptoms:
* Weakness, tiredness, or cramping in arm or leg muscles,
* Tingling or numbness
* Nausea or vomiting
* Abdominal cramping, bloating
* Constipation
* Palpitations (feeling your heart beat irregularly)
* Passing large amounts of urine or feeling very thirsty most of the time
* Fainting due to low blood pressure
* Abnormal psychological behavior: depression, psychosis, delirium, confusion, or hallucinations.

I have had all the symptoms that are bold. It doesn't explain the nightmares though unless that is psychological in nature.

MelodyL
03-20-2011, 09:46 PM
Thanks so much for your help. Yes it is confusing. If anything, maybe I better not let the b12 drop lower since I just read:
"lower limit in Japan and some European countries is 500-550 pg/mL and is based on the level which causes mental manifestations such as dementia and memory loss."

Also I am not sure about potassium. Some information says 3.7 is ok and some say that is too low. I am interested in knowing especially when I saw the symptoms:
* Weakness, tiredness, or cramping in arm or leg muscles,
* Tingling or numbness
* Nausea or vomiting
* Abdominal cramping, bloating
* Constipation
* Palpitations (feeling your heart beat irregularly)
* Passing large amounts of urine or feeling very thirsty most of the time
* Fainting due to low blood pressure
* Abnormal psychological behavior: depression, psychosis, delirium, confusion, or hallucinations.

I have had all the symptoms that are bold. It doesn't explain the nightmares though unless that is psychological in nature.

Sounds like you are experiencing some anxiety in your life. Perhaps if you spoke to someone about this? Maybe the nightmares would stop??

I do wish you well.

Melody

mrsD
03-21-2011, 07:49 AM
There is a amino acid called methionine...and it is necessary for our bodies to make SAM...which is a methyl donor for neurotransmitter synthesis. Methionine is usually found in animal food sources. If you get low in this, you could fail to make enough for your brain to run on.
http://www.drlam.com/opinion/methionine.asp

MethylB12 is only pennies a day orally. You could start at the lower dosage, 1000mcg a day on an empty stomach.

Online discount vitamin sources, have it, but stores most likely not. I've used iherb.com and Puritan's pride with good results.
I would use the methyl for the reasons, that are posted here at the beginning of this thread.

Check the content of your food choices for nutrients at this site:
http://nutritiondata.self.com/

Japan has high standards for their B12 because they had a huge accident involving a common drug used there that depleted B12 and left many dead and disabled as a result. So they tend to be more aggressive with the blood levels they use. The drug was clioquinol (aka Vioform).

pabb
03-22-2011, 08:22 AM
PLEASE consider gluten intolerance/celiac disease....your presentation would be classic.....

svguy
04-11-2011, 05:40 PM
I’m new here, but have been lurking for awhile - great forum with lots of info and insights.

I’m a 51 yo male, overall very healthy until last July. During a gym workout, I experienced a quite strong and unfamiliar occipital headache. That event seemed to trigger a progression of troubling neurological symptoms…

- Occipital headache (mid July), recurring and initially brought on by exertion, over time reduced to occasional, burning recurring surface pain
- Left-side (only) facial numbness (chin to cheek to eyebrow) (onset late July) – this numbing sensation feels as if lying below the skin surface, with normal sensitivity (hot, cold, touch, pressure) on the skin
- Tingling over torso and extremities (onset September), leading to generalized shooting “electric” sensations over entire body and pins/needles in hands/arms/feet
- Tingling/burning tongue/mouth/lips and tingling scalp
- Burning feet/legs, to a lesser extent, hands (onset October)
- Fatigue, mood changes, and overall body ache

After multiple doc and neurologist visits, MRA /MRI, complete physical, labwork, ruled out aneurysm, stroke, MS, tumor, lupus, etc. – basically all dread disease. Neurologist assessed it as idiopathic SFN (no biopsy yet).

Throughout, I’d wondered about a possible B12 deficiency - symptoms seem to match and I’d been a vegetarian for most of the 90’s. I started supplementing oral and sublingual B12 (2-4 mg/day), just in case. Then, I “discovered” online a connection between B12 deficiency and PPI use – I was diagnosed with GERD in 2003 and was on reflux meds (Prevacid and Prilosec) non-stop for 7.5 years. I got off that medication immediately and had temporary relief from the burning pain.

I had my doc order a serum B12 test in late October. This came back @ 1400 (!), though I was well into supplementation by the time of the draw, which I understand can distort results and can’t rule out a deficient condition or resultant damage.

In November I started a very aggressive supplementation regimen advocated on another blog, with sublingual mB-12 (15 mg/day) and adB-12 (3mg/day) and a host of vitamins, etc. Symptoms improved somewhat November-December, but then plateaued and seem to be worsening now – especially the burning feet.

I’m unsure, but I still think this could be a B-12 problem. My docs are less convinced. Would appreciate any thoughts/insights, and hearing of others’ experiences that involve both cranial nerves and feet/legs.

Many thanks!

mrsD
04-12-2011, 06:56 AM
Welcome to NeuroTalk.

I'd ask you to go back to July and think what you were doing then?

Did you have a virus? Did you take RX drugs for anything? Antibiotics, Cholesterol lowering drugs?

Were you exposed to anything in your home or work?

B12 is only one player in nerve maintenance. Omega-3's are also involved. Also B6 and folate. If you have the MTHFR mutation you won't be methylating folic acid properly either. So methylfolate should be on your supplement list.

You might have to look to your diet... do a trial of gluten free to see if gluten is triggering you. There are other foods to think about...like the nightshade family, dairy, etc.

Do you consume alot of restaurant food? MSG is a powerful trigger in restaurant foods. Sugar consumption? Cutting back severely on sugar and high glycemic foods like white bread, rice, may help.

Have you had your Vit D tested? Low D is very common these days and needs addressing.

These are some starting points.

Can you share with us exactly and how much you are taking of other supplements?

svguy
04-12-2011, 12:14 PM
Thanks for your speedy and thoughtful reply. It’s great to connect with folks who understand. I’ve been chasing this problem from many directions, so have touched many of these areas already. But you might have new insights…

1) Thinking back to July, I’d say I was among the healthiest people I know – regular exercise, modest diet, no major stressors. I was supplementing with a multi, Vit C, and fish oil. No prescription meds, but I was still on Prilosec daily dating to 2003. I did experience a very bad case of food poisoning at a fast food restaurant in late May. My doctors dismissed that due to the 6-7 week interval.

2) Can’t think of any exposures. My house is recent construction and my work is in a benign office building. It’s an older building, so I suppose some toxins are possible. I share that space with a business partner who has no symptoms. I had a hair analysis done late last year – no major problems identified.

3) I’m not aware of any MTHFR problems (though I see online that mutations are very common). I’ve been supplementing with methylfolate 800 mg daily since November.

4) I considered diet. Last year I’d say my diet was ok. I watched calories and fats, but not nearly enough whole foods. As well, I enjoyed too much coffee and diet soda. I dropped all artificial sweeteners in December, and have been off coffee since January.

5) I do consume a fair amount of restaurant food. Mostly at lunch during the workweek, and out for dinner once or twice during the week. I’m pretty careful with choices, though – places like Chipotle, Boston Market vs McDonalds and KFC for example. Also, in January, I decided to try a detox/cleanse. I followed “Clean” (Alejandro Junger) – you might be familiar with this program - 21 day elimination diet and detox. Among other, I removed all wheat, dairy, sugar, and nightshades. I stayed with that for 5 weeks, after which I incrementally reintroduced those foods watching for reactions, but found none. I was not overweight, but lost about 16 lbs while on that program.

6) My vitamin D was low last summer – 27 on my August lab. I started supplementing 1000-2000/daily at the time, and upped that to 4000-5000/daily this year. My March lab registered 66.

7) A few additional data points… My lipids improved significantly with changes in diet since last summer, but my March lab showed a very high C Reactive Protein – 8.4. Also, in March, I began to experience regular night sweats, some quite heavy – never had that before. Also, the other blog I’ve followed strongly advocates sublingual use of B12, not oral, so that has been my main use since starting the following regimen since November:

Daily Supplements:

MB12 (Jarrow) 5mg (3x) subingual
adB12 (Jarrow) 3 mg s
B Complex (Jarrow B-Right) (2x)
Metafolin 800 mg
Vit A 8000 iu
Vit C 1000 mg (was 4000 mg)
Vit D 4000-6000 iu
Vit E 400 iu
Calcium 500 mg (2x)
Magnesium 250 mg (2x)
Potassium 99 mx (4x)
Zinc 50 mg
Fish Oil 1400 mg (2x)
SAM-e 200 mg
L-Carnitine/ALA 500/150 mg (4x) (soon will change to R-Lipoic)
Co-Q-10 100 mg
Benfotiamin 150 mg (4x) (just started)

Whew...

Again, I'll appreciate any thoughts/suggestions.

mrsD
04-12-2011, 12:46 PM
I am going to put my comments in red within your quote:

Thanks for your speedy and thoughtful reply. It’s great to connect with folks who understand. I’ve been chasing this problem from many directions, so have touched many of these areas already. But you might have new insights…

1) Thinking back to July, I’d say I was among the healthiest people I know – regular exercise, modest diet, no major stressors. I was supplementing with a multi, Vit C, and fish oil. No prescription meds, but I was still on Prilosec daily dating to 2003. I did experience a very bad case of food poisoning at a fast food restaurant in late May. My doctors dismissed that due to the 6-7 week interval. Campylobacter food poisoning, is capable of causing PN. Also other viruses may attack the ganglions along the spinal cord. There is a post in the SubForum recently by en bloc about testing for this with a new MRI procedure. Have you had chicken pox in the past? Herpes zoster can live in the ganglia too.

2) Can’t think of any exposures. My house is recent construction (out gassing formaldehyde? The benfotiamine may help this) and my work is in a benign office building. (do bug spraying people come there?) It’s an older building, so I suppose some toxins are possible. I share that space with a business partner who has no symptoms. I had a hair analysis done late last year – no major problems identified.

3) I’m not aware of any MTHFR problems (though I see online that mutations are very common). I’ve been supplementing with methylfolate 800 mg daily since November.

4) I considered diet. Last year I’d say my diet was ok. I watched calories and fats, but not nearly enough whole foods. As well, I enjoyed too much coffee and diet soda. I dropped all artificial sweeteners in December, and have been off coffee since January.

5) I do consume a fair amount of restaurant food. Mostly at lunch during the workweek, and out for dinner once or twice during the week. I’m pretty careful with choices, though – places like Chipotle, Boston Market vs McDonalds and KFC for example.(there will be substantial MSG in those foods) Also, in January, I decided to try a detox/cleanse. I followed “Clean” (Alejandro Junger) – you might be familiar with this program - 21 day elimination diet and detox. Among other, I removed all wheat, dairy, sugar, and nightshades. I stayed with that for 5 weeks, after which I incrementally reintroduced those foods watching for reactions, but found none. I was not overweight, but lost about 16 lbs while on that program. (that is pretty thorough)

6) My vitamin D was low last summer – 27 on my August lab. I started supplementing 1000-2000/daily at the time, and upped that to 4000-5000/daily this year. My March lab registered 66.

7) A few additional data points… My lipids improved significantly with changes in diet since last summer, but my March lab showed a very high C Reactive Protein – 8.4.(wowsers--that is high and significant--showing major inflammation) Also, in March, I began to experience regular night sweats, some quite heavy – never had that before. Also, the other blog I’ve followed strongly advocates sublingual use of B12, not oral, so that has been my main use since starting the following regimen since November:
(no difference between subling and oral...you swallow that saliva where most of the B12 is...very little is absorbed in the small space under the tongue.--make sure you do this on an empty stomach.)

Daily Supplements:

MB12 (Jarrow) 5mg (3x) subingual
adB12 (Jarrow) 3 mg s
B Complex (Jarrow B-Right) (2x)
Metafolin 800 mg
Vit A 8000 iu (I would drop this if it is retinol form, which competes with Vit D absorption--- beta carotene form is ok)
Vit C 1000 mg (was 4000 mg)
Vit D 4000-6000 iu
Vit E 400 iu
Calcium 500 mg (2x)
Magnesium 250 mg (2x) (is this magnesium oxide? if so it is useless)
Potassium 99 mx (4x) ( save your money-- this is very low amount--otc potassium is not strong enough One V8 has 800mg in it)
Zinc 50 mg
Fish Oil 1400 mg (2x) (with that high C-reactive protein you need higher Fish oil, or Krill oil)
SAM-e 200 mg
L-Carnitine/ALA 500/150 mg (4x) (soon will change to R-Lipoic)
Co-Q-10 100 mg
Benfotiamin 150 mg (4x) (just started)

Whew...

Again, I'll appreciate any thoughts/suggestions.

I think that high c-reactive protein needs some attention. Night sweats are not normal either. They may be due to impaired glucose tolerance...lows at night while sleeping. But they also come from infections. Some parasites do this too.

You could add in some anti-inflammatory antioxidants. Grapeseed extract is efficient and affordable to start. The Krill oil has astaxanthin in it (red). An enhanced curcumin product will cost more, but you could try it also if you want. I'd start with the grapeseed extract. 200-300mg a day.

This is a start for you. I'd Google high C-reactive protein and see if you can find some triggers there that are in your life now.
That seems really high to me!

svguy
04-12-2011, 07:23 PM
Thanks mrsD for all the insights. You are a wonderful and very welcome resource. I’ll want to get back to you on some of those items, but here are some immediate thoughts...

That was the first time I’d seen CRP reported on my labs, and I must say that, after some research, I was quite frightened by that number. I took the CRP/sweats issues to my neuro – wondering which came first, the inflammation or the neuropathy - but he referred me back to my primary. That doc showed some concern (my EGD showed mild chronic gastritis – he thought that could be the problem) but focused on my PN pain and set up a trial of Cymbalta (which was awful). So next I’ll add the grape seed extract – thanks. Doc says we’ll recheck CRP over a few weeks time.

I started this morning with 5 mg mB12 orally on an empty stomach – will maintain that daily. The other blog (B12 deficiency) strongly advocates sublingual – says B12 diffuses into the tissue creating a gradient against the blood cells, where it is directly absorbed (more efficiently than oral or even injection). I hold the tablet between my upper lip and gum for 45-60 mins, 3x/day. I’ll continue with both methods for now.

When I first began mB12 supplementation last fall, I experienced some of the startup symptoms predicted on the other blog. They claim that these reactions are a very good predictor of active B12 deficiency - that folks with no deficiency will not react when given even very large doses of active B12. One such reaction that I experienced was persistent (several days, non-stop) muscle fascillations. They surmise these may be caused by rapid depletion (use) of potassium as the healing process begins. I took the K supplements directly and the fascillation ceased and so I added potassium to my daily supplement program.

Some troubling neurological symptoms did recede after I started the B12 protocol. But others persist, and now seem to be worsening. I'm still suspicious that some level of deficiency had a hand in my problems. Even so, it sounds like correcting any deficiency (or the damage it created) can take months, even years of steady assault and that symptoms wax and wane over the course of healing.

And, yes, I am using magnesium oxide. Can you suggest a better form? I am now starting a program with Nortriptyline, which last time gave me constipation, so I'll want an effective magnesium supplement on board to help with that.

mrsD
04-13-2011, 07:57 AM
The magnesium in your oxide IS a laxative...you can use it for that. Just don't expect it to help systemically.

I have a magnesium thread here:
http://neurotalk.psychcentral.com/thread1138.html

You can get it from food, by choosing wisely.

Magnesium is essential to helping repair nerves.

There are medical studies showing oral B12 works. You are taking a very high amount and only showing 1400 in blood level?

I and another member here using 5mg methyl B12 had readings at the maximum the test reads. (2000 for her and 1999 for me)
Do you have the link for that B12 sublingual claim. I'd like to see it.
Either PM me with the link (you cannot post it yet being a newbie) or give me the exact name of the blog, please?
Potassium is only depleted in those with severe anemia, as new blood cells are made with the B12 to get back to normal levels. There is considerable potassium in red cells. If you were not anemic...your need for potassium is not critical. We all should be eating 4500mg a day in our food, to stay healthy.

The long term use of Prilosec is concerning. There are some reports coming in about long term effects and the heart. I haven't found the papers yet (only a reference to it on a pay for view site so far).

But long term use of Prilosec has been linked to GI infections and lung infections. This is because the acid we normally have in our stomachs, kills off pathogens that may be in our food.
Without this acid those can cause illness. H. pylori for example can flourish in a lowered acid situation. Were you tested for this?

Those night sweats and high CRP levels, may be a sign of infection somewhere. Night sweats are also a sign of Lymphoma, so looking for swollen lymph nodes, might be a good idea.

An active viral situation in the ganglia, might also be your culprit. You can have Herpes simplex and zoster titres drawn to show if they are high. If so a course of antiviral may work. It does for some people with pain, and no skin outbreaks.
You can also try l-lysine in 1 to 2 gram a day amounts to see if that helps. If you see a decrease in pain, that would be your answer. My husband and I both had shingles in the past and we get pain, along our area of outbreak now and then. He just had a recurrance in his back, which went away quickly on the lysine this week. H.Zoster tends to outbreak in Spring for some reason commonly.

svguy
04-13-2011, 05:44 PM
OK thanks for the magnesium link - lots to review there. I’ll read through and pick a different form. I certainly want to be using something that could help in nerve repair.

My serum B12 test was taken early in my supplementation, before I began the full regimen shown above. I suspect I’d measure much higher today. I wish I’d been tested before beginning any b12 therapy to better assess if a deficiency is truly at the root of my problems. In October, after the onset my burning feet, my overall mood dropped and brain fog set in. I had great difficulty concentrating and spent a lot of time curled up on the sofa in a daze. Sleep was my only refuge. The weekend I stopped the Prilosec, that malaise reversed, and my burning pain lifted. That was the time I became very suspicious of B12.

Since then, I’ve been following the B12 deficiency thread at Wrong Diagnosis dotcom. The thread was launched by Sally Pacholok, who authored “Could it be B12, an Epidemic of Misdiagnosis.” There is a primary, ongoing thread for discussion, as well as a basics thread (like a Sticky). The basics page includes several posts as overview and introduction and covers the sublingual approach and the potassium issue as well. I’ll pm you the links.

I am dismayed at my long term use of the PPI medication, which was deemed safe by my primary as well as the prescribing ENT. I feel certain that it contributed to my current condition. B12 has been my main concern, but as you now suggest I can see where other problems might arise. In November I had an EGD and was tested negative for helicobacter. BTW, once I dropped Prilosec the heartburn began kicking in. However, since completing that detox/cleanse (and adding probiotics), I’ve had zero problems with heartburn.

I am very concerned about the high CRP and night sweats – that just isn’t normal – and so I appreciate your inputs on this. I tend to believe the inflammation and neuropathy go hand-in-hand.

An active viral situation would be another concern. I have no known history of herpes infection or shingles, but did contract chicken pox as a child. I’ll certainly explore it (hope I can get my doc to buy in on the testing).

mrsD
04-13-2011, 06:08 PM
I am aware of that thread at Wrong Diagnosis...

The main poster on it came from here...our other incarnation board. Basically he took Rose's information, and expanded on it greatly.

You don't have PMs activated...I couldn't send you one.

But this is Rose's website, which I refer to in the B12 thread:

http://sites.google.com/site/roseannster/home

Please activate your Private messages in your options field, so I can discuss this with you.

svguy
04-13-2011, 06:08 PM
Sorry, mrsD. I can't seem to figure out private messaging in order to forward you the links. All the pm "hooks" described in the FAQ are not showing up on my screen. Maybe that functionality is restricted because I'm a newbie.

Jolina
04-14-2011, 10:22 AM
question for anyone.. My b12 level was 249 they told me to take 1000 vit a day. I see that that is way to low of a dose.. I have also been taking it with food. so my question is. I have a friend that has a powder from Kirkmans that is the methylcobalamin that her kids take it is 5000 does.. has anyone heard of this and will this work?? or should I see if Kirkman's has a pill form.

mrsD
04-14-2011, 10:43 AM
Welcome to NeuroTalk.;)

question for anyone.. My b12 level was 249 they told me to take 1000 vit a day. I see that that is way to low of a dose.. I have also been taking it with food. so my question is. I have a friend that has a powder from Kirkmans that is the methylcobalamin that her kids take it is 5000 does.. has anyone heard of this and will this work?? or should I see if Kirkman's has a pill form.

There are 5mg doses at iherb.com from several manufacturers.
Also Puritan's Pride started carrying methylB12 oral too, which I took as a trial to see if it works, and it does splendidly. You can save alot of money with their sales. Soon the buy one get 2 free will be offered. Usually in early summer.

When taking methylcobalamin orally you MUST take it on an empty stomach. If you are low like this, that implies a failure of intrinsic factor. So you cannot rely on intrinsic factor to aid in absorption. The B12 then is passively absorbed in the small intestine...and presence of food acts as a sponge and reduces that. 5mg orally daily on an empty stomach should get you above 1000 in 3 months. I'd stay on it for at least 6 mos to a year since you have symptoms. Eventually you may be able to come down to 1000mcg (1mg) to hold at a good level. During the first year you will be building storage in the liver and also sending the B12 into the spinal fluid and brain. This is dependent on good serum concentrations, so you need to keep high for a while to accomplish that.

If you have some malabsorption issue in general, from inflammation like Crohn's disease or gluten sensitivity you probably will be low in other things. That is why diagnosis is important to show you what else you need to boost.

MelodyL
04-14-2011, 11:01 AM
Welcome to NeuroTalk.;)



There are 5mg doses at iherb.com from several manufacturers.
Also Puritan's Pride started carrying methylB12 oral too, which I took as a trial to see if it works, and it does splendidly. You can save alot of money with their sales. Soon the buy one get 2 free will be offered. Usually in early summer.

When taking methylcobalamin orally you MUST take it on an empty stomach. If you are low like this, that implies a failure of intrinsic factor. So you cannot rely on intrinsic factor to aid in absorption. The B12 then is passively absorbed in the small intestine...and presence of food acts as a sponge and reduces that. 5mg orally daily on an empty stomach should get you above 1000 in 3 months. I'd stay on it for at least 6 mos to a year since you have symptoms. Eventually you may be able to come down to 1000mcg (1mg) to hold at a good level. During the first year you will be building storage in the liver and also sending the B12 into the spinal fluid and brain. This is dependent on good serum concentrations, so you need to keep high for a while to accomplish that.

If you have some malabsorption issue in general, from inflammation like Crohn's disease or gluten sensitivity you probably will be low in other things. That is why diagnosis is important to show you what else you need to boost.


Mrs. D.

I have a question about intrinsic factor. My friend (7 days ago), had a vertical gastrectomy (vertical sleeve weight loss surgery). They took out 85% of her stomach. Kind of radical I know but she was determined and as of last night (after 7 days) she has lost 26 pounds.

She is on protein shakes and jello all kinds of liquids. No solid food yet.

I know she's on supplements and such, but with the loss of 85 % of her stomach does this have an effect on intrinsic factor? She does not take any Methyl B-12.

Shouldn't she be doing what I do and take 5000 every morning on an empty stomach?

Thanks much

mrsD
04-14-2011, 11:08 AM
Yes, she is no longer going to be making enough intrinsic factor, or eating foods high in B12 it looks like. She will also not have enough acid in her stomach to help with absorption of B12, folate, calcium, iron, zinc, and magnesium (and who knows what else).

Most bariatric patients suffer from lost Omega-3 fats, and many nutrients. It is a drastic way to lose weight, and over time has terrible trade offs.

MelodyL
04-14-2011, 11:22 AM
Yes, she is no longer going to be making enough intrinsic factor, or eating foods high in B12 it looks like. She will also not have enough acid in her stomach to help with absorption of B12, folate, calcium, iron, zinc, and magnesium (and who knows what else).

Most bariatric patients suffer from lost Omega-3 fats, and many nutrients. It is a drastic way to lose weight, and over time has terrible trade offs.

I agree but it was her decision and it's not reversible. They were not able to do lap band on her so she feels she had to go this route.

I can't bring this up to her (about the Methyl B-12). I know what I can't say and what I can say. If she brings it up to me, then it will because she asked me the question and I can then respond with: "Oh, I've read this on my one of my message boards about when one has bariatric surgery like the sleeve, one loses intrinsic factor, etc. etc.

This is the only way I can tell her about stuff like this.

And thanks very much.

Oh, by the way, this a.m. my sugar was 82. Still doing the fenugreek tea before bed time. Thank god I found this out.

lol

Jolina
04-14-2011, 11:32 AM
what do people think of going to see a naturpath dr and a neurologist. do you think seeing both would work. My issues started 4 weeks ago with tinglling and all over body sensetivity. then one night the icy hot feeling on my feet and hands started. that is when I saw the dr and they just said take b12. and wait a few months. I however call the neurologist and was in two days later to talk with her. she wanted to wait a few weeks and I go into do a emg and a ncs next friday. not sure after that what she will do. I started taking 200 gabapentin three times a day last sat. Yesterday was a bad day. burning all day and then woke up at 3am with burning. I have three small kids ad am already going down hill mentally. I just dont know what to do. this all came on so fast and I am lost.

mrsD
04-14-2011, 12:35 PM
I'd do the B12 correctly and wait 3 months to see what happens.

Do the tests the Neuro ordered and see what shows up.

If you do too many things at once you won't know which is working or not. You can watch your diet in the meantime and avoid sugar. That makes burning much worse for some people.

You can do a trial of gluten free and see if that works. Naturopaths often try to sell you lots of supplements to start, and you'd want to see how the B12 works alone, in the beginning.
You can always go later IMO.

You can have your doctor test your Vit D level too and correct that if it is low. Low D can cause problems.

Jolina
04-15-2011, 07:42 PM
I'd do the B12 correctly and wait 3 months to see what happens.

Do the tests the Neuro ordered and see what shows up.

If you do too many things at once you won't know which is working or not. You can watch your diet in the meantime and avoid sugar. That makes burning much worse for some people.

You can do a trial of gluten free and see if that works. Naturopaths often try to sell you lots of supplements to start, and you'd want to see how the B12 works alone, in the beginning.
You can always go later IMO.

You can have your doctor test your Vit D level too and correct that if it is low. Low D can cause problems.

Question on the b-12. my healthfood store has a coenzyme Lonzenge that is 2500mcg methylcobalamin. will that work the same if I take two.?? or does it have to be a pill

mrsD
04-16-2011, 07:25 AM
That's okay....you will probably pay more for it that way, but it is not that expensive after all.

You can chew them up and swallow-- on an empty stomach. That part is very important.

californiafriend
05-09-2011, 10:13 AM
Hey guys, ive been reading these posts and since everyone here seems so knowledgable about B12 i was hoping you might be able to answer a question :) I had blood work done that showed that i was low RBC count and high MCV and MCH which my dr. thought i could be B12 deficient but it just so happened i started taking a high sublingual B12 suppliment the day that i took the blood test which made my b12 levels over 1400H! So my question is, is it possible that (if i was B12 deficient) that the levels could move up that high after just a few doses of a b12 suppliment?

MelodyL
05-09-2011, 11:12 AM
Hey guys, ive been reading these posts and since everyone here seems so knowledgable about B12 i was hoping you might be able to answer a question :) I had blood work done that showed that i was low RBC count and high MCV and MCH which my dr. thought i could be B12 deficient but it just so happened i started taking a high sublingual B12 suppliment the day that i took the blood test which made my b12 levels over 1400H! So my question is, is it possible that (if i was B12 deficient) that the levels could move up that high after just a few doses of a b12 suppliment?

Hi.

you said:

" i started taking a high sublingual B12 suppliment the day that i took the blood test"

So that's ONE dose, right?

you also said: " is it possible that (if i was B12 deficient) that the levels could move up that high after just a few doses of a b12 suppliment?"

So was it ONE dose, or a FEW doses?

I'm not an expert, Mrs. D is the expert, but I really don't think that ONE dose or a few for that matter, of an oral B-12 supplement could get you to that number.

I'm sure Mrs. D will come along and give us the correct info.

I'm curious as to what the answer actually is.

I'm still learning.

lol Melody

Linda1956
05-31-2011, 02:19 PM
Hi there everyone i was only diagnosed having a low b12 deficiency when i had surgery although that wasnt the cause im told but as time went on i got more tired to the stage my gp done a few blood tests to prove i had this auto immune condition.

Im told i dont have pernicious anaemia but just a very low b12 so my gp had put me on 50mcg cyanocobalamin tablets, ive a course of 50 but now been on them since 27/4 and feeling no better, is this normal, ive to have another blood test done next week just to see how things are.

Will i have to end up with injections if the tablets dont work or is the injections only for people with pernicious anemia

Any advice will be useful because im new to having this condition

Linda:confused:

mrsD
05-31-2011, 02:43 PM
50mcg orally is not enough IMO. You will need 1000mcg to 5,000mcg orally at least. Only 1-10% is absorbed orally. So take this on an empty stomach to get the best results.

Please read the beginning of this thread for dosing oral, and also choosing the active form methylcobalamine instead of Cyano.

MelodyL
05-31-2011, 07:30 PM
50mcg orally is not enough IMO. You will need 1000mcg to 5,000mcg orally at least. Only 1-10% is absorbed orally. So take this on an empty stomach to get the best results.

Please read the beginning of this thread for dosing oral, and also choosing the active form methylcobalamine instead of Cyano.

50 is absolutely NOTHING. You are not absorbing 50. I have been taking 5000 for over 2 years now.

Doctors don't know this, or they don't want to know this.

Listen to what everyone says on this forum. You will learn quite a bit.

All the best

Melody

numbfoot
06-01-2011, 07:57 PM
Been taking 1000mcg per day for a year or so now.
Havent had a test for a while but last one was around 650.
Thought I would step it up & get some Jarrows 5000.
Nothing over 1000 available over the counter in this country, so have just placed an order with iHerb.com
Be interesting to see it arrives ok.

capewind
06-04-2011, 06:14 PM
50mcg orally is not enough IMO. You will need 1000mcg to 5,000mcg orally at least. Only 1-10% is absorbed orally. So take this on an empty stomach to get the best results.

Please read the beginning of this thread for dosing oral, and also choosing the active form methylcobalamine instead of Cyano.

I wonder in your opinion if a B12 of 320 pg/ml could be low for someone with PN? PCP say level is normal! I am not convinced. I know about your info and agree on dose an type plus empty stomach. Any feedback would be helpful! Thanks. P.S. Have serious burning stinging pain in feet, toes and now hands.

kwinkler
06-04-2011, 08:23 PM
Hey guys, ive been reading these posts and since everyone here seems so knowledgable about B12 i was hoping you might be able to answer a question :) I had blood work done that showed that i was low RBC count and high MCV and MCH which my dr. thought i could be B12 deficient but it just so happened i started taking a high sublingual B12 suppliment the day that i took the blood test which made my b12 levels over 1400H! So my question is, is it possible that (if i was B12 deficient) that the levels could move up that high after just a few doses of a b12 suppliment?

It would all depend on timing. If you took the SL B12 fairly close to the blood draw, it would falsely elevate the value. I have experienced this with get my niacin levels checked. It is actually short lived in the blood in detectable levels. If I took it the night before it would be below the detectable level. If I supplemented in the AM it would be detected. I usually hold supplementation for a day or two prior to testing to get a more accurate measure of what my true levels are.

capewind
06-06-2011, 05:13 PM
I am new at this but a blood test gives results of what is currently in blood stream. I could only find the 1000mcg Methylcobalamon ( important to use this form!) at my store. Have them ordering the 1/5 mg tabs. Heard that hard to get to high on a reading since it is water soluble. Empty stomache very important. I need to know if I should chew them or swallow??? I am going to start with 5,000 mcgs daily. I may take some AM and noonish. Any feedback enjoyed! I wonder if there are all kinds of crazy viruses that docs do not know of that are causing so much PN?

mrsD
06-06-2011, 06:18 PM
Might be "crazy viruses". But also CRAZY drugs given to you by your dense doctor too! Or unnecessary vaccines!

MelodyL
06-06-2011, 08:08 PM
I wonder in your opinion if a B12 of 320 pg/ml could be low for someone with PN? PCP say level is normal! I am not convinced. I know about your info and agree on dose an type plus empty stomach. Any feedback would be helpful! Thanks. P.S. Have serious burning stinging pain in feet, toes and now hands.

Your reading is WAY TOO LOW.

You have a deficiency. You've read the postings. You now know what you should be doing. And yes, on an empty stomach.

Keep us posted.

All the best.

Melody

MelodyL
06-06-2011, 08:09 PM
I am new at this but a blood test gives results of what is currently in blood stream. I could only find the 1000mcg Methylcobalamon ( important to use this form!) at my store. Have them ordering the 1/5 mg tabs. Heard that hard to get to high on a reading since it is water soluble. Empty stomache very important. I need to know if I should chew them or swallow??? I am going to start with 5,000 mcgs daily. I may take some AM and noonish. Any feedback enjoyed! I wonder if there are all kinds of crazy viruses that docs do not know of that are causing so much PN?


Hi. for the past (almost 3 years), I take my 5000 upon arising in the a.m.

Then I eat breakfast about 45 minutes later.
Works for me.

Melody

capewind
06-06-2011, 09:56 PM
Hi. for the past (almost 3 years), I take my 5000 upon arising in the a.m.

Then I eat breakfast about 45 minutes later.
Works for me.



Melody

I will swallow them. Going to take 5000 to start until build up.
I have learned lots here in the last few days. Appreciate all the posts!

LadyB
07-20-2011, 06:30 PM
Thanks I will look for this brand I like the brand I use as an oral product but am always interested in an alternative just in case my brand goes away as happened in the past;

I am wondering if folks know that anti-acids OTC or RX;d wiil lower B12 ?
And it takes time to get it back up to normal levels.

[Melody;Over two years ago, I went to iherb.com and bought the JARROWS Methyl B-12 5000. Been taking it every day since without a hitch.

MelodyL
07-20-2011, 07:41 PM
Thanks I will look for this brand I like the brand I use as an oral product but am always interested in an alternative just in case my brand goes away as happened in the past;

I am wondering if folks know that anti-acids OTC or RX;d wiil lower B12 ?
And it takes time to get it back up to normal levels.

[Melody;Over two years ago, I went to iherb.com and bought the JARROWS Methyl B-12 5000. Been taking it every day since without a hitch.

Hi LadyB

Then it's a good thing that I NEVER take anti-acids for anything. Thank god. Must be all the sprouts I eat. Never have a problem.

Glad you are doing okay on the Methyl B-12

Melody

Dutch
09-01-2011, 12:16 PM
Thank you for this info. I started to become resigned that there was nothing I could do about my neuropathy symptoms

karsten
09-01-2011, 09:49 PM
Hi LadyB

Then it's a good thing that I NEVER take anti-acids for anything. Thank god. Must be all the sprouts I eat. Never have a problem.

Glad you are doing okay on the Methyl B-12

Melody

I took Prilosec for 10 years combined with drinking everyday for a couple of decades. This appears to be the root of my problems. Doctors never told me about the perils of acid blockers. I quit Prilosec 1-1/2 years ago and now have stopped drinking completely for about 2-1/2 months.

I'm a strong advocate of Mb12. Also, I have recently removed all folic acid out of my supplement regime and use methyfole exclusively. Its a bit early to tell, but I think that is making a difference. Some people have trouble processing folic acid in adequate amounts for healing to occur. Just another attempt at finding ways to get better. Something all of us strive for. :)

zeeclass6
09-02-2011, 04:21 AM
Hi! I don't have PN, but I found your thread searching for B-12 deficiency. You people seem to know a lot about B-12 so I wanted to ask you my questions.

I'm a 50 year old woman. I have Hashimoto's. I have a chronic problem with lingering depression and recently a LOT of achiness in my body (not Fibro, just general arthritic-like achiness). I also get very tired sometimes for no apparent reason and have other symptoms, such as back and foot pain at times, vision getting more blurry (might just be "aging"), getting very stressed and sometimes very anxious. I've been on and off SSRIs and recently have been off them and don't want to get back on them. The depression has gotten a little better since taking high EPA fish oil supplements and also increasing my Vitamin D.

I was recently diagnosed with mild sleep apnea and thought that going on CPAP might help. So far, it hasn't.

Anyway, I got a new GP and she thought to test my B-12 level. It is 398. She said it should be at least 500. She suggested I take an additional B-12 supplement. I already take a very good B-complex that supposedly has a lot of B-12, so I was very surprised to hear that my B-12 was low. It had never been tested before (I'm peeved that my Endocrinologist never tested me for this).

I'm reading here on this thread that B-12 should be taken on an empty stomach first thing in the morning. Well, I already have to wait an hour after I take my Synthroid to eat. Now I have to wait another hour for the B-12? Can I take B-12 and Synthoid at the same time? I was going to get the sublingual variety -- the Methyl....not the Cyclo.... (don't remember the technical names of them).

What about my B-complex? Nobody ever told me to take that on an empty stomach. I've been taking it with breakfast!

I would appreciate some guidance on how to take these supplements properly and integrate them with my Synthroid.

I also take a birth control pill, but I take that before I go to sleep at night so it won't interfere with anything else. I will be off The Pill totally in a couple of years according to my GYN.

Other than that, I take a multi vitamin, the D, sometimes some Ester C, and the fish oil capsules at lunchtime with the meal.

Thank you for your guidance!

mrsD
09-02-2011, 07:29 AM
I take both my B12 and thyroid together. Never had a problem with this as tests show both are doing well.

FOOD, esp the fiber in food complexes the B12 and reduces its passive absorption in the intestine (this is not including intrinsic factor).

Complexes usually have small amounts of B12 and this will not make it to the intestine if food is present and/or you have little or no intrinsic factor activity. If you have good intrinsic factor status, you may absorb the B12 in them. But people who are testing low and/or have neuro symptoms typically have low serum levels, and hence that implies that intrinsic factor is not working. Hence you need to assure passive absorption instead, meaning taking a high dose orally on a empty stomach.

Intrinsic factor needs acidic stomach and can be destroyed by autoimmune disease or be not present genetically .

Dr. Smith
09-02-2011, 08:44 AM
sometimes some Ester C,

Sometimes? I can't take ascorbic acid due to IBS, so I take 1000-4000 mg. of Ester C daily. Since it's a water-soluble like B-12, and there's no upper limit, it's probably not a bad idea to take it daily (amount up to what works best for you; I take more undr stress, when I'm exposed to viruses, etc.). The extra calcium in Ester C isn't bad either.

I recently had the same question about B-12 & Synthroid for my aunt (and got the same reply from mrsD). No problems that I've heard of.

Any idea why the CPAP isn't working well? There's a separate forum for that, if you'd like to go into it.

Most of the other symptoms you describe may be the Hashimoto's (from what little I've read about it - all kinds of thyroid issues in the family) but could be other things coincidental. Off the top of my head, magnesium and pantothenic acid come to mind, but that's something to investigate, decide for yourself, and talk with your doctor about. Sounds like your new PCP may have more on the ball.

Best wishes,

Doc

zeeclass6
09-02-2011, 02:01 PM
How can I be checked for intrinsic factor? Is it a blood test or something more complicated than that? Do regular laboratories do the test or will I need to do something with a special lab? I'm seeing my Endocrinologist in early October and usually get various blood tests before the appt.

Should I also get my other B vitamins tested? My folate levels are good, as are my Magnesium and other blood work I've done.

The more I think about the, the more I'm angry that none of my doctors thought to add this simple blood test to my panel until now. I started seeing a new GP and she added B-12 as an afterthought! I may have been deficient in B-12 for the past 15 years (I have had Hashimoto's since the birth of my second child 15 years ago).

Thanks for letting me know that I can take the B-12 and Synthoid together. That really helps.

This morning I took my Synthroid early (half awake in bed) and later after I got up, I took 1,000 mcg of B-12 sublingual, as well as my regular B-complex (which I now see has 400 mcg of B-12). Within a half hour I began to feel rather shaky. I suppose it will take some trial and error to find the right dosage, at least for first thing in the morning. Perhaps taking 1400 mcg all at once is too much for me at the moment. Should I divide it up and take it a couple of times per day? I know that I shouldn't take it too late in the day, as it is "activating."

The sublingual B-12 I got at Walgreens is Cyanocobalamin (sp?) and is made by Nature's Bounty. My B-Complex has 400 mcg Methylcobalamin and is made by Pure Encapsulations. It also has 20mg of B-6 (10 mg of Activated B-6 and 10 mg of non-Activated). I could list all the ingredients if you want. It's supposed to be a very good brand, but I would appreciate advice from you guys on a good brand of each of these (B-12 and a B-complex). I know that being on the birth control pill can additionally sap me of B vitamins, so that might be an additional factor in this.

I noticed that someone had said they were taking Jarrow. I know that is a good brand. I have an excellent health food store in town that I could get that from (or just go online).

Thank you all so much for your advice and help!

zeeclass6
09-02-2011, 02:16 PM
Another question about B-12 or what auto-immune disease can do to your gut....

After my second child was born 15 years ago, I got depressed, was found to have Hashimoto's....and began to get lactose intolerant, "out of the blue."

Until recently, I just took a Lactaid pill with dairy and I was fine.

But in the past few months, the lactose intolerance is beginning to become a huge problem. Even if I take 1 or 2 Lactaid Ultra pills, some dairy foods still give me a problem with gas, bloating, and very embarrassing very foul smelling wind, like an awful sewer! It is disgusting. It's as if I didn't even take the Lactaid pills. I have had to totally avoid dairy for several days to calm it down when it gets bad.

I drink Lactaid milk and that's OK for me (a little in my decaf or cereal....I don't guzzle it). I know that soft cheeses are worse, and that dairy foods low in fat are worse, so I try to avoid those.

Can B-12 deficiency and/or auto-immune disease be causing this sudden increase in lactose intolerance?

I'm sure you guys might tell me to give up dairy, but I don't want to!

I wasn't this way when I was younger....never used to have any sort of problem with dairy before my daughter was born in 1996 and all hell broke loose in my body.

Oh, BTW, I had a colonoscopy last year (welcome to age 50) and was found to be squeaky clean, no problems whatsoever.

mrsD
09-02-2011, 03:38 PM
Very little B12 is absorbed orally. That is why you take a huge dose so a few micrograms will get thru. Not likely to cause anything noticeable at all. Doctors typically don't test intrinsic factor anymore (Schilling's test--most labs stopped offering it)
There is a test for antibodies to stomach parietal cells to look for autoimmune issues.
http://www.nlm.nih.gov/medlineplus/ency/article/003351.htm

You could be shakey due to low blood sugar, in the morning.

You can try something for foul smelling GI issues. Get some Psyllium seed (either powder or the capsules) Take one or 2 capsules daily to start with alot of water at mealtimes, and see if they work. Say one for breakfast and one dinner.
They will absorb any toxins in your bowel, that are causing you grief (smells and IBS type symptoms). This works very well for minor bowel disruptions. You may find you can eat better after a couple of weeks of this. Also look at your sugar consumption. Fructose can cause lots of gas, as well as sucrose, because it feeds Candida. Stop all sugar and fructose for 2 weeks and see if the gas is better. These are two common causes. If this does not work, you'll have to think of something else to try.

You may need some good probiotics ultimately, but try this simple inexpensive thing first.

zeeclass6
09-02-2011, 04:17 PM
Any advice on brands of B vitamins which are better than average?


Also, is the sublingual Cyanocobalamin OK, or should I be looking for sublingual Methylcobalamin instead?

mrsD
09-02-2011, 05:00 PM
Oral works the same. I don't believe much is absorbed sublingually. The tablet dissolves and you swallow that saliva and it then becomes ORAL.

karsten
09-02-2011, 10:40 PM
Oral works the same. I don't believe much is absorbed sublingually. The tablet dissolves and you swallow that saliva and it then becomes ORAL.

I take mine as a sublingual. There are a few differences between oral and sublingual.

The tablet is placed under the tongue and kept there as long as possible letting it slowly dissolve. I can make a single 5000 mcg Jarrow Mb12 last about 30 minutes this way before it's completely dissolved. After it is dissolved, I wait another 30 minutes or so before drinking anything to allow for some additional absorbtion of the B12 into the tissue lining of my mouth and throat.

Avoid chewing or slurping down the tablet which is the same as taking it orally. Placing it under the tongue lets the B12 be directly absorbed by the blood stream. In theory, it is then easily absorbed by the body for immediate use.

Naturally, a sizeable portion of the tablet does get consumed orally anyway as it runs down into the throat to the stomach.

I believe one can achieve a faster rate of absorption for this method of administration than by purely oral use.

Tablets taken orally undergo the process of normal digestion. I'm almost paranoid regarding the ability of my digestive system to properly absorb B12 so I go the sublingual route knowing that part of the dosage passes through the blood stream to the brain.

glenntaj
09-03-2011, 07:28 AM
--given some of the symptoms you've described, and the strong possibility of malabsorption and autoimmune issues, some testing for celiac and gluten sensitivity would seem to be in order:

http://sites.google.com/site/jccglutenfree/

mrsD
09-03-2011, 08:08 AM
I have never found any papers in 10 yrs showing sublingual is a good way to provide B12 in supplement form. The oral mucosa is a very small surface area and the molecule needing absorption is very large.

If people insist on doing this, the only harm is causing some inflammation or reaction of the mouth membranes to the tablet and its other contents. If the pH of the tablet is acidic, then erosion of dental enamel may occur as well.

There ARE however many papers evaluating ORAL vs injectable forms and the oral has shown repeated success and value.

more here:
http://en.wikipedia.org/wiki/Vitamin_B12

B12 remains a sublingual because historically that is how it began orally. Now we know orally works (especially if used on an empty stomach). This is common in medicine...historical use. Magnesium oxide now known to not be absorbed at all orally is still prescribed by doctors for low magnesium levels, because historically it was the only magnesium supplement for a long time. Another remaining historical use is D2 on RX...which has been found about 80% less effective than OTC D3 in correcting D deficiency. But doctors continue to prescribe it anyway.

If anyone can find a good study showing sublingual B12 is better than oral, I'd like to see it.
There are many papers on PubMed now concerning ORAL administration, and its usefulness.

I chew up my tablets (which are cherry flavored) and swallow on an empty stomach. My tests showed a very robust response to my trial of the new Puritan's methylcobalamin. (level 1999 after 3 months of treatment--this is the top of the testing range and US labs typically cannot read higher).

karsten
09-03-2011, 08:20 AM
[QUOTE=glenntaj;801966]--given some of the symptoms you've described, and the strong possibility of malabsorption and autoimmune issues, some testing for celiac and gluten sensitivity would seem to be in order:


Thanks Glenn. I'm looking for a new neuro willing to actually listen and perform more than just the most simple tests. This possibility will be on my list.

pabb
09-03-2011, 12:02 PM
anyone..with..Hashies...should..be..checked..for.. celiac,..gluten..issues

karsten
09-03-2011, 12:04 PM
I have never found any papers in 10 yrs showing sublingual is a good way to provide B12 in supplement form. The oral mucosa is a very small surface area and the molecule needing absorption is very large.

If people insist on doing this, the only harm is causing some inflammation or reaction of the mouth membranes to the tablet and its other contents. If the pH of the tablet is acidic, then erosion of dental enamel may occur as well.

There ARE however many papers evaluating ORAL vs injectable forms and the oral has shown repeated success and value.

more here:
http://en.wikipedia.org/wiki/Vitamin_B12

B12 remains a sublingual because historically that is how it began orally. Now we know orally works (especially if used on an empty stomach). This is common in medicine...historical use. Magnesium oxide now known to not be absorbed at all orally is still prescribed by doctors for low magnesium levels, because historically it was the only magnesium supplement for a long time. Another remaining historical use is D2 on RX...which has been found about 80% less effective than OTC D3 in correcting D deficiency. But doctors continue to prescribe it anyway.

If anyone can find a good study showing sublingual B12 is better than oral, I'd like to see it.
There are many papers on PubMed now concerning ORAL administration, and its usefulness.

I chew up my tablets (which are cherry flavored) and swallow on an empty stomach. My tests showed a very robust response to my trial of the new Puritan's methylcobalamin. (level 1999 after 3 months of treatment--this is the top of the testing range and US labs typically cannot read higher).

I can't find any "real" studies suggesting sublingual is better than oral. Everything I have found through research indicates that oral and sublingual B12 abosrption rates are equal. The one difference is that sublinguals might be better with those that have intestinal aborption issues. There are potential disadvantges as well if inflamation occurs inside the mouth with use of sublinguals.

Here are some links of interest:

http://sublingualb12report.com/

http://en.wikipedia.org/wiki/Sublingual_administration

http://www.livestrong.com/article/517790-why-are-sublingual-tablets-absorbed-quickly/

http://www.livestrong.com/article/223651-how-are-sublingual-vitamins-absorbed/

I don't have any inflamation issues in my mouth associated with sublinguals, but I know they can occur in some people. My first experience with sublingual B12 was a strong reaction (feeling anxiety combined with a jittery caffiene type feeling) about 2-3 minutes after putting it under my tongue so I know it abosrbs quickly into the blood stream. How much actually is abosrbed through the tissue lining into the blood stream vs. orally as it passes into the stomach is debatable. I do know that the longer you keep the pill under your mouth or between the cheek and gums, the better the absorption rate through the blood stream. Some days I can make the tablet last a long time and other days not so much.


Sublinguals are not for everyone and the effective use of B12 administered orally is well documented.

zeeclass6
09-03-2011, 01:26 PM
anyone..with..Hashies...should..be..checked..for.. celiac,..gluten..issues


I was tested for gluten intolerance about 8 years ago and was found to be fine with that. We did the full blood panel for it, whatever that was.

Should I be tested for that again? Can you just "develop" it if you've tested negative for it in the past?

mrsD
09-03-2011, 02:05 PM
Yes, some studies imply that heavy use of NSAIDs (like Aleve and Ibuprofen and others) suppress Cox-2 enzyme in the GI tract that is useful there in preventing unwanted substances like the gluten peptide from entering.

So it is possible but not proven 100% that gluten intolerance may be acquired. This is different from genetic Celiac which has gene markers present. It is not known at this time if other drugs also cause this. But so far with the abundance of tablets consumed by the American Public RX and OTC daily, significant GI impact may occur and contribute. Even little kids, are taking Motrin liquid commonly.

Other inflammations of the GI tract may also be an issue.

zeeclass6
09-04-2011, 11:25 PM
Interesting. I do take more Ibuprofen than a lot of people because of my back pain. I "try" not to take it, but some days I just can't function without it and will take 2 or 3 Advil a couple of times per day. Or more if I'm really suffering (which thankfully isn't too often).

I will have to pay close attention to see if my GI issues get worse when I've been taking Ibuprofen. I never correlated that before, so thank you!

BTW, I hurt my foot recently and my podiatrist told me to take Aleve twice a day for a week. It made me incredibly depressed and I had to switch to Ibuprofen instead. When I stopped taking the Aleve, my mood felt better within a day. I'm staying away from that stuff! As far as I can tell, Ibuprofen doesn't give me any mood problems. (Either does Tylenol).

I also want to add....I've been taking 1,000 mcg of B-12 for the past few days and my energy level and concentration are so much better already! Not sure why I felt so hyper after taking it the first time (the Cyano variety), but the Methyl variety seems to be fine. Not sure if the fact that the first one was Cyano has anything to do with it. But anyway, I'm thinking about increasing to 2,000 mcg for a while if I tolerate it. I understand that a person should usually start off at a higher dose for the first few weeks, then level off a bit.
Does that sound like a good plan, or should I stay on 1,000 steadily? I'm getting my blood tested again in mid-October, which will be enough time to see whether the B-12 supplementation is helping raise my levels.

mrsD
09-05-2011, 07:27 AM
You can go up if you feel like it for the B12. I'd stop it about a week before testing, just to eliminate the contribution of the supplement to your test results.

I would expect a good response to be 1000 or more. If it is less than 1000, then I'd go higher on the B12 until it serum levels go up.

If you have good intrinsic factor status, you should see a robust response to the B12. This would be because you are absorbing more than a person with damaged intrinsic factor. This is important to know, for future supplement needs and use.

NSAIDs vary in how lipophilic they are. (soluble in fat). The high lipophilic ones pass into the blood brain barrier more easily.
Ketoprofen is typically the one chosen for topical use for this reason.(many compounded creams use it) The more lipophilic ones will cause blurred vision and drowsiness in some people. Indomethacin, which is highly lipophilic, is often used for headache treatments in fact.

I tried to find a list of NSAIDs according to lipophilicity, but was not successful.

I personally find Aleve tablets useless for my purposes. But the liquigel? I find it excellent. Hubby does not like it however. So there are personal reactions to the various dosage forms.

pabb
09-05-2011, 08:16 AM
I was tested for gluten intolerance about 8 years ago and was found to be fine with that. We did the full blood panel for it, whatever that was.

Should I be tested for that again? Can you just "develop" it if you've tested negative for it in the past?

YES!!!..you..can..develope..celiac...at..any..time ...you..inherit..the..predisposition...need..a..tr iggering..event......ie,...stressful...event...... physical-or-psych.

zeeclass6
09-06-2011, 11:45 PM
I need a little more advice. I've been searching the web and can't seem to get a straight answer on this....

At first the B-12 was making me feel good and energetic. In fact, these days I feel pretty good in the morning and early afternoon. I've been taking the B-12 for about a week, and I have been noticing that I have begun to feel extremely tired by around 3 p.m. I mean, REALLY dragged out like I need to take a nap. This is not usual for me. I am beginning to suspect that the B-12 has something to do with it, because this late afternoon tiredness began a few days after starting the B-12.

I read something about the connection between B-12 and potassium...that if you start on B-12 supplements you might get low in potassium. There is no way for me to know my potassium levels without a blood test, and I won't have one for another month.

In the morning, I take the 1,000 mcg B-12 along with my Synthroid about 45 minutes before I eat, and my B-complex with breakfast.

In the afternoon I usually take my multi-vitamin (which has 80 mg potassium), along with 2,000 IU vitamin D, and fish oil capsules.

Sometimes I'm out for lunch and don't have my vitamins with me, so I don't take the lunchtime vitamins until dinner. Either way, I seem to be getting really tired by 3 p.m. and I remain tired for many hours.

I don't drink caffeine (can't tolerate it -- just wanted you to know that caffeine has nothing to do with this).

Any ideas why I'm getting so tired? Could it be potassium? Should I be taking a potassium supplement as well? If so, when should I take it, and how much? (Or I could try adding more potassium-rich foods to my diet, like maybe one can of prune juice (I love prunes!)

If it's not potassium, then what could be causing it?

Thank you!

glenntaj
09-07-2011, 05:27 AM
--that have nothing to do with your supplementation, including a low blood sugar state post lunch (relative hypoglycemia), which is not all that uncommon . . .

Also, people's circadian rhythms differ, and a number of people report a natural down period in the middle of the afternoon, especially if they are prone to post-meal hypoglycemic states . . .

Has this only been happening since you've been supplementing, or has it been present before and been exacerbated by it, or is it more noticeable in comparison with the relatively higher morning energy state?

mrsD
09-07-2011, 07:34 AM
The potassium connection only exists for those very low in B12 levels to start with, who had anemia as well.

High injectable doses of B12 which may be given daily in the beginning, will stimulate the bone marrow to make more red cells quickly. Red cells contain alot of potassium and since this mineral is not stockpiled in the bones like calcium is, a sudden need for it may develop.

It is not going to happen the same way as a gradual oral supplementation of B12 would be vastly different.
I don't get the energized thing with B12 at all. Some people don't.
You might want to eat potassium rich foods, as many people don't, and the new nutritional target recommendation is 4.6 grams a day.
A can of V8 juice is very high (about 600-800mg)...higher than bananas, etc. The low sodium one is 1100mg! This is easy to do, and more effective than OTC supplements which are only 99mg. Gatorade only supplies 30mg a serving...useless.

But we all do have a circadian rhythm of cortisol production. It is highest in the morning after breakfast and a second less high spike after dinner. It is lowest at 4am or so (and this is when people most commonly die in hospitals or in their sleep) and a second less low dip at 4pm in the afternoon. This is why I believe the British have "teatime". A snack at 4pm tends to take away the subjective feelings of being low when that cortisol dips.

My guess is that when people are low in B12, they feel awful most of the time, and the 4pm dip is just more of the same. Improve things and get going nicely, and these patients would feel better for most of the day, so when the "dip" arrives it is more noticeable.

B12 responsive is highly subjective and always has been. Doctors know this, and in the historical past used to use it as a placebo treatment for any complaints of "tiredness" and fatigue that patients would complain about. It was so abused this way that the medical community overreacted and slapped sanctions on doctors for using it this way. So today, we see a reluctance to even test for it, or use the new lab ranges that are more accurate, because the med schools still teach that it is a mostly useless treatment and not to do it! To this day many doctors ignore elevated MCV in the blood work which is a direct hint that B12 is low!

I received the blood work of my cat, which was done before vacation. And the vet on the phone said it was all normal. But it is not...HER MCV is elevated! And I looked that up on the net at a Vet site, and MCV is elevated in about 50% of hyperthyroid cats. And she has that nodule on her left lobe he found. So tomorrow, I will be going to a cat specialty vet, and I just bet she gets some B12 injections! (I saw another owner picking that up for HER cat one day in the waiting room!)

I am still reeling that our own 13 yr old cat may need B12 ---and that her tests show what happens to humans as well!
I'll post tomorrow afternoon, as her appointment is at 10am.
I might have to wait for her bloodwork. (this cat vet does some right there, and sends other things out to a lab).

ger715
09-07-2011, 11:57 AM
Mrs. D - When I joined in July, 2011 I had done a post to you; not realizing at the time, you were on vacation Had spine fusion/laminectomy L4-5, red angry nerve (doctor's words) and cysts going surrounding many of the vertebrae (cysts removed). Post surgery, still left with severe pain, as well as shin pain in both legs. Orginal and 2nd surgeon both felt there was nothing more that could be done and was referred to a Pain Specialist, which I currently am seeing.
Due to heavy pain meds (oxycotin, percocet) developed severe constipation eventually resulting in Cystocele surgery. Within a week or so, my legs,feet,ankles started swelling. (currently take Spironolactone and Furosemide daily)Also, developed statsis dermatatis in feet and ankles now up to knees.Shortly afterwards the burning feet, ankle and leg pain was awful and kept getting worse. I thought it was from the Statsis Dermatatis. My internist/endocrinolgist said the pain was from my Neuropathy. Started lookin info and now everything going on made sense, including balance problem as well.

Until a couple of months ago, when I started taking Methyl B12 took Miralax about 5 or 6 times a week. Although I have a lot of cramping and stomach issues since taking the Methyl B12, I only need Miralax once a week.

I recently had lab work done prior to doctor's appointment. Appointment cancelled and do not see doctor until the end of September. Since I had started taking the Methyl B12 and a B Complex asked doctors' office to check B12 & B6 (had purchased B6; but only took a few days) levels as well as other tests (hypothroid) Also, am taking 2,000 Vit D's daily since originally had been low at 18.
After six weeks of taking the Methyl B12 my count was 922. My D had gone up to 32. I had the B6 lab test done last week. The doctor's office called today to tell me my B6 was 54.1 and the normal is 2.0 - 32.8. Since I had only taken the BComplex for about a week and only a couple of days of B6 (about 8 weeks ago) and now take only the B12, I don't believe the high B6 number is due to the BComplex or B6 vitamin. I will be seeing the doctor in a few weeks; but am concerned about the B6 number. I would appreciate any imput you can give me.
Gerry

mrsD
09-07-2011, 12:15 PM
Different labs have different B6 ranges. I've seen some in US go up to 90 or so. Others lower.

This remains a gray area in vitamin testing. Serum testing is always less accurate than cellular testing, because cells can rupture and spill contents into the serum causes false highs.
Potassium also can be affected this way.

If you eat any enriched foods, then you can be getting B6 that way as well.

None of the studies I've looked at which reported very high B6 side effects ever noted the actual number on the abstracts. So we don't really know if your level is worrisome or not.

Nervous
09-07-2011, 01:02 PM
So today, we see a reluctance to even test for it, or use the new lab ranges that are more accurate,




I'll be having my B12 and other stuff retested this month.

What are the new B12 ranges?

Thanks!

mrsD
09-07-2011, 01:14 PM
Anything below 400 is suspect. Anything below 300 can have substantial neuro symptoms. Anything below 200 is scary!

Anything higher is desirable. There is no absolute high...only where the machines can test to... which I have seen reported on a few sites at 2000. That is in US pg/ml concentrations.

I think people with substantial neuro symptoms should aim for 1000 at least.

ger715
09-07-2011, 10:31 PM
Different labs have different B6 ranges. I've seen some in US go up to 90 or so. Others lower.

This remains a gray area in vitamin testing. Serum testing is always less accurate than cellular testing, because cells can rupture and spill contents into the serum causes false highs.
Potassium also can be affected this way.

If you eat any enriched foods, then you can be getting B6 that way as well.

None of the studies I've looked at which reported very high B6 side effects ever noted the actual number on the abstracts. So we don't really know if your level is worrisome or not.

I had started the Methyl B12, and a few times a week took R-Lipoic Acid. Also, for a brief period, Benfotiamine (B1) because of having read some articles about the possibility of regenerating damaged nerves using these vitamins/ supplements. Do you think taking these may help the process or regenerating the damaged nerves?
Gerry

zeeclass6
09-07-2011, 11:23 PM
No, I definitely feel that the B-12 has something to do with it. I feel markedly more tired for no apparent reason. I'm getting 7 to 8 hours of sleep at night, so it's not sleep deprivation. This fatigue began a few days after starting the B-12 supplementation. Today, for instance, I felt tired all day long.

I was researching this on the web and found posts from other people (on other forums) that complained of fatigue after getting B-12 shots (which I know are much stronger than the 1,000 mcg oral pill I'm dissolving in my mouth every morning).

I'm very sensitive to medications in general and sometimes have paradoxical reactions. For example, I once tried a magnesium/calcium powder supplement called Natural Calm, which is supposed to help make you feel relaxed and sleepy. Instead, it made me incredibly wired as though I'd had a lot of caffeine!






--that have nothing to do with your supplementation, including a low blood sugar state post lunch (relative hypoglycemia), which is not all that uncommon . . .

Also, people's circadian rhythms differ, and a number of people report a natural down period in the middle of the afternoon, especially if they are prone to post-meal hypoglycemic states . . .

Has this only been happening since you've been supplementing, or has it been present before and been exacerbated by it, or is it more noticeable in comparison with the relatively higher morning energy state?

mrsD
09-08-2011, 05:38 AM
I had started the Methyl B12, and a few times a week took R-Lipoic Acid. Also, for a brief period, Benfotiamine (B1) because of having read some articles about the possibility of regenerating damaged nerves using these vitamins/ supplements. Do you think taking these may help the process or regenerating the damaged nerves?
Gerry

Yes, I think all 3 are helpful for some people. R-lipoic helps with mitochondrial functions, and Benfotiamine is a cofactor in
metabolism carbohydrates and of certain dehydrogenase enzymes ...one of which metabolizes alcohols and aldehydes.

zeeclass6
09-11-2011, 11:05 PM
Well this is interesting. I came across an old lab test from 7 years ago, in 2004. It's the only time (as far as I know) that my B-12 level was ever previously tested.

My B-12 level in 2004 was 1627.

And my B-12 level from last month was 398.

I have taken a B-complex vitamin daily for many years, so it's not like I wasn't trying to get extra B vitamins. And I have always eaten a sensible well-balanced diet.

What would cause a woman's B-12 level to drop so dramatically in 7 years?

I've had Hashimoto's Thyroiditis for the past 15 years. Would that be the sole reason, or might there be something else?

I need to know what else to ask my endocrincologist to test me for when I see her next month.

pabb
09-11-2011, 11:45 PM
Well this is interesting. I came across an old lab test from 7 years ago, in 2004. It's the only time (as far as I know) that my B-12 level was ever previously tested.

My B-12 level in 2004 was 1627.

And my B-12 level from last month was 398.

I have taken a B-complex vitamin daily for many years, so it's not like I wasn't trying to get extra B vitamins. And I have always eaten a sensible well-balanced diet.

What would cause a woman's B-12 level to drop so dramatically in 7 years?

I've had Hashimoto's Thyroiditis for the past 15 years. Would that be the sole reason, or might there be something else?

I need to know what else to ask my endocrincologist to test me for when I see her next month.

not enough in most B complex tabs/caps to matter...you are apparently not absorbing as well as you were....consider celiac disease...good luck

zeeclass6
09-12-2011, 03:20 AM
not enough in most B complex tabs/caps to matter...you are apparently not absorbing as well as you were....consider celiac disease...good luck

Thanks. I got tested for celiac about 12 years ago (full blood test for all markers, or whatever you call them) and it was all negative/normal. But who knows...I've been having a more difficult time with my lactose intolerance lately, so I suppose it would not be out of the question to get another celiac test to see whether something has changed in my gut. I do eat a lot of wheat and other whole grains, but have never noticed any overt symptoms of trouble with gluten. Only dairy gives me a direct problem....thank God for Lactaid pills and Lactaid milk!

I will ask my endocrinologist to add the celiac test to my next lab slip. Specifically what should be tested (what should I ask for)? I want to make sure that the test is complete.

mrsD
09-12-2011, 03:44 AM
I have found as I aged, that I developed lactose issues too.
Not severe, but I do use the Lactaid milk and avoid Ice Cream.
I can do cottage cheese and yogurt in moderation.

But what really can upset me majorly is fructose! I get terrible gas and other more extreme reactions from this so I have to avoid sugar almost 100%. If I have a small bit with other food it seems I can have a treat now and then (chocolate). But no fruit to speak of, or sugared drinks. Gatorade will send me to the can within an hour. I can tolerate an orange a day, if it follows a meal.

I also followed a gluten free lifestyle for about 3 yrs and found it did not help me very much. It was the fructose avoidance that helped me the most.

glenntaj
09-12-2011, 06:26 AM
--be sure to have them titer your anti-gliadin IgG and IgA (the former is the most sensitive, but least specific test to see if you are making antibodies to gluten, and is often associated with non-celiac gluten sensitivity); the anti-transglutaminase IgA and IgG (the first being the most closely associated with celiac that would have progressed to the point of degeneration of intestinal villi); and total IgA (some people have deficiencies in this and it skews the result of the other tests).

There are some more advanced tests in the pipeline that are supposed to be more specific, but I've yet to see them appear at standard labs. The Gluten File discusses this, and lots of other things--it is an excellent resource:

http://sites.google.com/site/jccglutenfree/

Many of us develop absorption problems as we age--you may not have any gluten problems and may be suffering from lack of intrinsic factor to break B12 out of food, and that should be investigated as well.

zeeclass6
09-12-2011, 03:51 PM
Thanks for the very useful link and the info!

If my doctor doesn't want to test me for these, I will find one who will. I just don't want to leave any stone unturned at this point. I want to make sure that the B-12 problem isn't just the tip of the iceberg. And above all, I want to feel better!

Can B-12 deficiency or gluten problems be implicated in chronic pain syndrome? I DON'T have fibromyalgia, but it seems like my back, neck, and shoulders always hurt and takes forever to feel better. And recently I developed a problem with my big toe joint that is also taking a very long time to heal. It seems that I feel pain very acutely, and when I feel it for more than a few days in a row, I wind up getting very depressed from it. So I wonder if there is some biological reason for this, other than "you don't have enough seritonin."

I'm a person who likes to watch the show "Mystery Diagnosis" because I keep wondering if I'll stumble upon a cure for these annoying problems I keep having with pain and depression.....



--be sure to have them titer your anti-gliadin IgG and IgA (the former is the most sensitive, but least specific test to see if you are making antibodies to gluten, and is often associated with non-celiac gluten sensitivity); the anti-transglutaminase IgA and IgG (the first being the most closely associated with celiac that would have progressed to the point of degeneration of intestinal villi); and total IgA (some people have deficiencies in this and it skews the result of the other tests).

There are some more advanced tests in the pipeline that are supposed to be more specific, but I've yet to see them appear at standard labs. The Gluten File discusses this, and lots of other things--it is an excellent resource:

http://sites.google.com/site/jccglutenfree/

Many of us develop absorption problems as we age--you may not have any gluten problems and may be suffering from lack of intrinsic factor to break B12 out of food, and that should be investigated as well.

glenntaj
09-13-2011, 06:44 AM
--who have chronic pain, typically neurologic pain, from B12 deficiency and/or gluten sensitivity.

B12 deficiency is one of the great masqueraders, but over time, if left untreated, it can affect every system in the body. It is fortunate that, if properly diagnosed, it is easily treatable. But recovery may well depend on the degree of damage experienced before the diagnosis and beginning of treatment.

BTW, that big toe joint problem should probably also occasion an investigation into gout.

Katanya
09-20-2011, 05:09 AM
Please help! Newbie, please read profile, mom had Pernacious Anemia, feel tired all the time, swollen tongue on empty stomach, gluten problems, hematocrit levels always off, enzymes and alkaline phosphate off, feel better for short time with spinach and kelp! History of infertility, does thus sound like Pernacious Anemia?

mrsD
09-20-2011, 08:41 AM
Welcome to NeuroTalk:

I think you should start with some tests at the doctor.
B12 for sure, and Vit D.

Many doctors call very low results "normal" because the lab ranges have not changed for B12 and hence are outdated. Please read this thread to understand how to interpret and choose a B12 supplement.

If you have gluten issues, you may not be absorbing many other nutrients. But start with the B12 first, as it is very common to be low in people with gluten intolerance.

Infertility can be from PCOS, or high consumption of trans fats (this is new information) from the diet. Being underweight also can contribute. I'd start with the vitamin testing to see where you are at, and go from there.

pabb
09-21-2011, 08:25 AM
infertility can also be related to celiac.

mikotoe
09-22-2011, 10:58 AM
Hello MrsD,
I'm hoping you can offer a bit of insight...

About two years ago I was diagnosed with low platelets, and what I thought was a back injury, Though several mris did not find anything unusual, about 6 months later I started to get intense numbness in my legs. Several doctors later I was diagnosed with B12 deficiency by my neurologist, I was treated with Cyanocobalamin shots twice a week, then once a week, then once a month for about a year, my neurological symptoms improved from when I began treatment, but hasn't completely ceased and tents to come back towards the end of the month (before the next injection is administered). I was getting my monthly shots from my primary care dr. but when I became pregnant, by dr. wanted to check my level first, then referred me back to my neurologist.

My neurologist referred me to a gastroenterologist who diagnosed me with positive antipariatal cells and he told me I didn't have the intrinsic factor, I was also checked for celiacs disease, which was negative.
The Gastoentologist gave me an injection of cyanocobalamin but It had been about two months since I had a shot, and I was 7 weeks pregnant. At 9 weeks, I miscarried. I am now reading that B-12 deficiency can be linked to miscarriage. While at the dr. I asked about a prescription for methlycobalamin injections but he wasn't familiar with them and gave me a prescription for cyanocobalamin injections 1000mcg once a month.

Two months later, I am pregnant again, now 5 weeks, I have been taking the cyanocobalamin injections monthly, as well as 1000mcg sublingual b12 tablets daily. I had my injection a week and a half a go, and now my legs are already starting to feel numb again. I'm very concerned that I don't have the proper amount or type of b-12 to have myself or my baby be healthy. so my question is this:

What is the recommended dosage of B-12 injections for pregnant women who are unable to absorb the vitamin in their stomach?

Where can I acquire Methlycobalamin as an injection?

If I can't get the Methlycbalamin as an injection, will the methlycobalamin sublingual tablets be helpful to someone who cant absorb it via stomach?

Is it possible that although I have been on a treatment plan that I could still be deficient due to getting cyanocobalamin instead of methlycobalamin and do I need to make up for that?

Are there any doctors you would recommend in the NYC area who specialize in b-12 issues?

Thank you so much for all of your posts, already I realized I have been taking my sublinguals with food, when I should be taking them without!

I would appreciate your insight into these issues, I would love for my neurological issue to be resolved, as well as to have a healthy pregnancy.
Thank you!
Holly

mrsD
09-22-2011, 11:46 AM
Welcome to NeuroTalk.

I think you should skip the doctors and injections...they are certainly not helping you properly.

Get your B12 level measured when you think the shot has worn off so you know what that level really is. Get the numbers and post here.
If in another country, post the nmol/L so I can convert them to US figures.

You CAN establish good blood levels easily with ORAL methylcobalamin, and taken every day on an empty stomach.
It WILL work even when you have no intrinsic factor.

Getting shots once a month with no testing to show if that is working for you is just sloppy, and makes assumptions that all people are alike.

There is a methylcobalamin injection, but they are compounded at compounding pharmacies and will cost more. I believe they have a short shelf life also, once made up.

Babies can be born to B12 deficient mothers, but do not do well and have neuro problems. I'd get the B12 test ASAP if I were you.

It is your decision to stick with doctors who are not treating you adequately, and take control yourself with oral. Many doctors do not believe that oral works...and they are wrong. Studies show it works. But you have to take a high dose like 5mg a day and only on an empty stomach for best results. Passive absorption takes place without intrinsic factor only in high doses.

kate525
09-25-2011, 12:08 PM
Hi Mrs. D,

I've been away from this site of almost 8 months now but find myself needing to make my way back again. You gave me such wonderful support and advice (page 5 of this thread) that you are the only one I can think of to turn to.

I've continued to treat aggressively for lyme disease and all the co infections(tested positive for lyme, bartonella, babesia) and for some time now, for the most part, i've been able to maintain a painfree life due to the neurontin. In April I actually backed off 600 mg's to 3000 vs 3600 (not much to some but it gave me such hope!). I do have breakthrough periods but i'm able to cope with them no problem. Until recently. Here's where i'm at:

I still take all the supplements you advise w/ some minor tweaks in mg's.

I just had a repeat skin biopsy(first one was in 2006 showed abnormal and then after 3 mos of IVIG showed normal. *** I was NOT having any painful neuropathy at ALL and was mainly using it for experimental LYME treatment so the biopsy improvement never made sense to me***)

Repeat biopsy done 8/11 is NORMAL??? Yet, for the past 2.5 years i've had intense burning pain in my feet. HOW do you get an ABNORMAL repsonse when you have zero pain/symptoms and a NORMAL repsonse when you're in agony?

As of the past 8 weeks or so, it's spreading. My face, mouth, lips and ankles, calves and legs are burning. My back feels like I'm getting electrical jabs in it. The past week in particular has been horrible. I feel like i'm a rotissere chicken:eek:

The neuro said we may have just taken the biopsy from parts of the skin that hadn't been affected but that seems impossible! They were taken almost on top of the old biopsies(visible scars). Obvioiusly it has to be a FALSE negative?

I have been tested for everything you've mentioned to others on this forum, everything. And with the exception of lyme (and hosimito antibodies but "no symptoms" yet), everything is negative!

Two factors you should know..

All this time I THOUGHT I was taking a B12 supplement and I wasn't! I don't know how this happened but if you saw my pill case...56 pills in all, every day..it gets confusing, especially when you're sick(still battling lyme stuff). Anyway, i was suppose to be taking the shots but we had complications but I assumed I was covered with the orals(which I wasn't actually taking). I do take the benfo and a b6. Don't know how I missed the B12.

Second, my dad has neuropathy . For him it started 18 years ago and for most of that time he just had a couple of numb toes. It then turned to burning but never painful. Now, after chemo, his feet are bad..incredibly numb. But, he doesn't have problems beyond his feet. He has also had lyme, several times and has had 4 back surgeries.

I asked my neuro if this could be hereditary and he said no. That hereditary is generally autonomic and not small fiber but I'm scared. My pain is far worse then my dads and has progressed much, much faster then his. My intermittent tingling began when i was 28 (1998-I was told it was lyme stuff) then left for years only to come back as mild tingling in late 2008. I then woke up with SEVERE burning one day in 2009 and it's never gone away again.

I am not on any meds that can cause neuropathy.

My blood markers are ALL normal. This includes celiac(even had biopsies), sjornes, cmt, auttoimmune markers, diabetes, full neuropathy panel, etc..

My lyme doc says that 70% of people with chronic lyme(took years for them to finally figure it out) have neuropathy. I am doing everything I can and where a week ago I thought I might be able ot back off more neurontin..I'm now Im suddenly on fire around the clock(and all over).

I can't take hot baths. I cant jump, dance, run or skip with my kids. I can't even take YOGA anymore because tho I have no pain while doing these things, the next day and for several days later, the pain breaks through(prior to this latest development). What is happening to my life???

No clue what to do...

Thanks for reading:(
Kate

zeeclass6
09-25-2011, 12:11 PM
I was wondering why I feel anxious and shaky after I take Cyanocobalamin, but I do not get that bad effect when I take Methylcobalamin? Both tablets are the same dose (1,000 mg).

I have both forms of B-12 in my house. The Cyanocobalamin tablet (Nature's Bounty) dissolves very fast under my tongue, and then for several hours afterwards I feel rather anxious and shaky. Eventually the feeling dissipates but I don't like it. It reminds me of how I used to feel when I got allergy shots laced with epinephrine, or how I feel if I have caffeine. I have tried it several times, both on an empty stomach and not. It's always the same effect.

The Methylcobalamin (NOW, Jarrow -- I have both) has absolutely no side effect for me, and I feel fine after dissolving that under my tongue. (The Jarrow one takes a really long time to dissolve).

Any idea why one would make me feel anxious and the other doesn't? I know that the Methyl variety is absorbed better by the body, but that's about all I know about the difference between the two.

Thank you!

mrsD
09-25-2011, 12:19 PM
If you want to...PM me your medication list. Some antibiotics deplete nutrients and some CAUSE PN.

Your dad might benefit from Acetyl carnitine...which may help the chemo PN. It works better, taken while on the chemo, but it is worth a try. Start at 500mg a day and increase slowly if needed to 2 grams or so, in divided doses for him.

You really should get a Vit D test, and B12 test to see where you are with these.

Burning pain can also be from food intolerances. Some foods also release histamine which makes for burning. I get burning from potatoes of all things!

If you were on oral antibiotics for a long time, I'd try some Kefir.
I just was very sick with a GI thing, and a friend suggested this to me...and I'm amazed at how it corrected me! I feel better ALL over too! It has 12 organisms in it to re-establish normal flora in the GI tract. I've just finished my first quart, Lifeway brand, and really recommend it now for anyone recuperating from illness. It is a fermented yogurt drink. And at first when I was so nauseated it was tough, so I diluted it a bit.

I intend to have at least 3 oz a day now FOREVER! That is how good it has been for me! ( I use the unflavored one as the others have more sugar which I try to avoid).

http://www.lifeway.net/

We found this in our local Kroger's!

zeeclass6
09-25-2011, 12:23 PM
I have Hashimoto's. Have you had your thyroid levels tested (TSH, free T4, T3, etc?) If not, please get those tested. You could need thyroid supplementation. Often if you have antibodies but no symptoms, you could still benefit from thyroid supplementation. Some people do well on Synthroid and some do better on "natural" dessicated thyroid.

I hope you find the answer to your questions and that you feel better soon and overcome your problems! ((HUGS!!!!))


Hi Mrs. D,

I've been away from this site of almost 8 months now but find myself needing to make my way back again. You gave me such wonderful support and advice (page 5 of this thread) that you are the only one I can think of to turn to.

I've continued to treat aggressively for lyme disease and all the co infections(tested positive for lyme, bartonella, babesia) and for some time now, for the most part, i've been able to maintain a painfree life due to the neurontin. In April I actually backed off 600 mg's to 3000 vs 3600 (not much to some but it gave me such hope!). I do have breakthrough periods but i'm able to cope with them no problem. Until recently. Here's where i'm at:

I still take all the supplements you advise w/ some minor tweaks in mg's.

I just had a repeat skin biopsy(first one was in 2006 showed abnormal and then after 3 mos of IVIG showed normal. *** I was NOT having any painful neuropathy at ALL and was mainly using it for experimental LYME treatment so the biopsy improvement never made sense to me***)

Repeat biopsy done 8/11 is NORMAL??? Yet, for the past 2.5 years i've had intense burning pain in my feet. HOW do you get an ABNORMAL repsonse when you have zero pain/symptoms and a NORMAL repsonse when you're in agony?

As of the past 8 weeks or so, it's spreading. My face, mouth, lips and ankles, calves and legs are burning. My back feels like I'm getting electrical jabs in it. The past week in particular has been horrible. I feel like i'm a rotissere chicken:eek:

The neuro said we may have just taken the biopsy from parts of the skin that hadn't been affected but that seems impossible! They were taken almost on top of the old biopsies(visible scars). Obvioiusly it has to be a FALSE negative?

I have been tested for everything you've mentioned to others on this forum, everything. And with the exception of lyme (and hosimito antibodies but "no symptoms" yet), everything is negative!

Two factors you should know..

All this time I THOUGHT I was taking a B12 supplement and I wasn't! I don't know how this happened but if you saw my pill case...56 pills in all, every day..it gets confusing, especially when you're sick(still battling lyme stuff). Anyway, i was suppose to be taking the shots but we had complications but I assumed I was covered with the orals(which I wasn't actually taking). I do take the benfo and a b6. Don't know how I missed the B12.

Second, my dad has neuropathy . For him it started 18 years ago and for most of that time he just had a couple of numb toes. It then turned to burning but never painful. Now, after chemo, his feet are bad..incredibly numb. But, he doesn't have problems beyond his feet. He has also had lyme, several times and has had 4 back surgeries.

I asked my neuro if this could be hereditary and he said no. That hereditary is generally autonomic and not small fiber but I'm scared. My pain is far worse then my dads and has progressed much, much faster then his. My intermittent tingling began when i was 28 (1998-I was told it was lyme stuff) then left for years only to come back as mild tingling in late 2008. I then woke up with SEVERE burning one day in 2009 and it's never gone away again.

I am not on any meds that can cause neuropathy.

My blood markers are ALL normal. This includes celiac(even had biopsies), sjornes, cmt, auttoimmune markers, diabetes, full neuropathy panel, etc..

My lyme doc says that 70% of people with chronic lyme(took years for them to finally figure it out) have neuropathy. I am doing everything I can and where a week ago I thought I might be able ot back off more neurontin..I'm now Im suddenly on fire around the clock(and all over).

I can't take hot baths. I cant jump, dance, run or skip with my kids. I can't even take YOGA anymore because tho I have no pain while doing these things, the next day and for several days later, the pain breaks through(prior to this latest development). What is happening to my life???

No clue what to do...

Thanks for reading:(
Kate

mrsD
09-25-2011, 12:29 PM
I was wondering why I feel anxious and shaky after I take Cyanocobalamin, but I do not get that bad effect when I take Methylcobalamin? Both tablets are the same dose (1,000 mg).

I have both forms of B-12 in my house. The Cyanocobalamin tablet (Nature's Bounty) dissolves very fast under my tongue, and then for several hours afterwards I feel rather anxious and shaky. Eventually the feeling dissipates but I don't like it. It reminds me of how I used to feel when I got allergy shots laced with epinephrine, or how I feel if I have caffeine. I have tried it several times, both on an empty stomach and not. It's always the same effect.

The Methylcobalamin (NOW, Jarrow -- I have both) has absolutely no side effect for me, and I feel fine after dissolving that under my tongue. (The Jarrow one takes a really long time to dissolve).

Any idea why one would make me feel anxious and the other doesn't? I know that the Methyl variety is absorbed better by the body, but that's about all I know about the difference between the two.

Thank you!

Some people do not do well on the cyano...something to do with cleaving off the cyanide portion.
Cyano has to be methylated in the body to methylB12 before our enzymes can use it properly.

You can chew up the Jarrow and swallow..just do it on an empty stomach.
I switched to Puritan's Pride...the tablets are finer, smaller and easier on the mouth. In fact they pulverize in the bottle and I save the powder and take that too!

kate525
09-25-2011, 12:31 PM
I have Hashimoto's. Have you had your thyroid levels tested (TSH, free T4, T3, etc?) If not, please get those tested. You could need thyroid supplementation. Often if you have antibodies but no symptoms, you could still benefit from thyroid supplementation. Some people do well on Synthroid and some do better on "natural" dessicated thyroid.

I hope you find the answer to your questions and that you feel better soon and overcome your problems! ((HUGS!!!!))

THANK YOU for your hugs. I have had my hormoes tested and they are all fine. They get tested every 4 months. I have asked about trying supplementation for it but none of my docs(conventional and alternative) think it's necessary. Maybe I should push for it? *sigh* I dont know.

Kate

kate525
09-25-2011, 12:40 PM
If you want to...PM me your medication list. Some antibiotics deplete nutrients and some CAUSE PN.

Your dad might benefit from Acetyl carnitine...which may help the chemo PN. It works better, taken while on the chemo, but it is worth a try. Start at 500mg a day and increase slowly if needed to 2 grams or so, in divided doses for him.

You really should get a Vit D test, and B12 test to see where you are with these.

Burning pain can also be from food intolerances. Some foods also release histamine which makes for burning. I get burning from potatoes of all things!

If you were on oral antibiotics for a long time, I'd try some Kefir.
I just was very sick with a GI thing, and a friend suggested this to me...and I'm amazed at how it corrected me! I feel better ALL over too! It has 12 organisms in it to re-establish normal flora in the GI tract. I've just finished my first quart, Lifeway brand, and really recommend it now for anyone recuperating from illness. It is a fermented yogurt drink. And at first when I was so nauseated it was tough, so I diluted it a bit.

I intend to have at least 3 oz a day now FOREVER! That is how good it has been for me! ( I use the unflavored one as the others have more sugar which I try to avoid).

http://www.lifeway.net/

We found this in our local Kroger's!

Yes, Kefir is a staple in my home in addition to 3 other type of probiotics. I have never seen a correlation to any food either. I did just go back on antibiotics(I take small week breaks at times) so my doc thinks it could be a lyme "flare." I just don't know what to think. I start and stop all the time and have never exploded with all over pain. I feel it's getting worse.

Have you any knowledge of the skin biopsy testing? Can it be wrong??

Last I was tested, my B12 (it's beena while though) was around 450 and VD was fine. I still take 50,00 of VD a week regardless.

From your experience, does this sound like it could be hereditary? My dad is fine, he just shruggs it off and moves along. He is stubborn and refuses to take any of the supplements I tell him about. He's not in pain so he just doesn't want to give it any attention(Grrr!). I mentioned him to you from a hereditary standpoint..wondering if you knew anything about it..

I will PM you my list, but I caution you..it's LONG!

Thanks,
Kate

SqueakyWheel
09-25-2011, 12:46 PM
I'm a new member and can't figure out how to post a question except to reply to one. Can someone plz tell me? I also want to make sure I'll be notified when a reply is posted. :confused:

mrsD
09-25-2011, 12:47 PM
I'd send Glenn a PM and ask him. He talks to his expert doctors about all the tests, and he is very informed about them.

I do know that I've seen him post here that some doctors do not use the punch biopsy because they don't "trust" it .
I think but do not quote me, that he mentioned Mayo as one place that doesn't like the punch biopsy yet.

And it is true, it is not cast in stone... it is rather new, and needs good interpretation etc.

zeeclass6
09-25-2011, 12:57 PM
THANK YOU for your hugs. I have had my hormoes tested and they are all fine. They get tested every 4 months. I have asked about trying supplementation for it but none of my docs(conventional and alternative) think it's necessary. Maybe I should push for it? *sigh* I dont know.

Kate

You say that your thyroid hormones are fine, but if your TSH is greater than 3.0, you have a problem. Some labs say that anything under 5.0 is normal. But several years ago the thinking shifted on this, and a lot of labs and doctors changed their thinking, and now prescribe thyroid meds for anyone with a TSH higher than 3.0

Personally myself -- if my TSH goes above 2.0 I begin to feel awful.

So look at your blood tests and look at the numbers, just to be sure.

I have read that taking Selenium can actually lower or eliminate thyroid antibodies. I haven't done this myself because right now I don't want to mess with things as my thyroid is rather stable. But it's something to ask your doctors about. (As if you need another pill to take).


BTW, you say that your B-12 is 450. From what I have learned on this message board and in general on the web, 500 is the minimum it should be, or higher. Apparently it cannot get "too high." Many people here know more than I do about B-12, but I think they'd say the same thing (please correct me if I'm wrong, guys).

zeeclass6
09-25-2011, 01:06 PM
Thanks, Mrs. D. I appreciate the advice on chewing the B-12. It takes SO LONG for it to dissolve!

Do you think that my reaction to the cyano B-12 has any relationship to the way I react to caffeine and other stimulants? I've been trying to figure out why, over the past 10 years, I have become intolerant to caffeine and stimulant drugs like Sudafed. I just can't tolerate more than a tiny tiny amount of caffeine. A cup of coffee practically gives me a panic attack....so much anxiety. I have asked my doctors about this but they have no idea. I used to be able to drink coffee and take Sudafed, but not anymore. It's perplexing and makes me think very carefully about medications.


Some people do not do well on the cyano...something to do with cleaving off the cyanide portion.
Cyano has to be methylated in the body to methylB12 before our enzymes can use it properly.

You can chew up the Jarrow and swallow..just do it on an empty stomach.
I switched to Puritan's Pride...the tablets are finer, smaller and easier on the mouth. In fact they pulverize in the bottle and I save the powder and take that too!

mrsD
09-25-2011, 01:11 PM
I really don't think your reaction is like caffeine.

When doctors test people under the tongue with substances they cannot tolerate...the do get reactions. (this practice is not accepted by all doctors however).

But the cyano is what is triggering you, not the cobalamin part IMO.

Try swallowing instead of under the tongue. There may be no reaction that way.

Chemar
09-25-2011, 01:26 PM
I'm a new member and can't figure out how to post a question except to reply to one. Can someone plz tell me? I also want to make sure I'll be notified when a reply is posted. :confused:

Hi and welcome

you do a new thread the same way as a reply, except you just go to the forum you want to make it in and then you will see NEW THREAD near the top left of the page so for example this forum
http://neurotalk.psychcentral.com/forum20.html

look for the NEW Thread button, click, type in the box, and submit
hth :)

mrsD
09-25-2011, 01:28 PM
I am sorry I missed that post! :o

When I am posting, sometimes they don't show up quickly for me. I guess I have to empty my cached pages now!

--edit to say--I just emptied my cache.... and it crashed FireFox!

But I assume I am good to go now, at least for a while! ;)

zeeclass6
09-25-2011, 03:02 PM
Thanks for the advice.

I'm not sure if my doctor will prescribe any B-12 shots for me when I see her next month after getting re-tested. I was worried that the shots might cause a severe anxiety reaction like the cyano. But based on what you said, it seems that it probably wouldn't. It will be interesting to see whether the oral supplementation I've been doing for the past month (1.5 months when I get the test in mid-Oct) will show any improvement.

I plan to stop taking all my B vitamins one week before getting my blood drawn for the test. Does that sound about right?


I really don't think your reaction is like caffeine.

When doctors test people under the tongue with substances they cannot tolerate...the do get reactions. (this practice is not accepted by all doctors however).

But the cyano is what is triggering you, not the cobalamin part IMO.

Try swallowing instead of under the tongue. There may be no reaction that way.

mrsD
09-25-2011, 03:32 PM
Yes, one week off of them should do it.

AlwaysLearning
09-25-2011, 04:19 PM
Wow - what a fascinating and informative thread. Thank you all for your help.

I had my first visit with a new MD, and had CBC, Vit D, and thyroid testing a few weeks ago. My D was "in the toilet", using his words. (33 out of 32 to 100 mass/volume test range.) This surprised me as I do use a multi vitamin and mineral supplement, and drink OJ with Calcium and D almost every day. I also try to eat well, with lots of veges, fruits, whole grains, meats, and dairy. At the moment, I don't avoid any food groups. However, he suggested an elimination diet, which I will start after I get back from vacation in a few weeks.

After reading on this thread, I wonder if my B-12 is also low. I didn't get a copy of my bloodwork; I keep forgeting to do that. I will do that this week!

It seems that if I am not absorbing the D I've been taking, maybe I am not absorbing other nutrients either.

I three meals plus snacks, sit at a desk most of the day, and am stuck at almost 115 pounds, which is thin for 5' 5".

I started having PN symptoms early this year, though I didn't know that's what it was. I went to a podiatrist when my feet hurt so much I was using crutches and couldn't drive. He diagnosed capsulitis and PN, and gave me cortizone injections in my feet for the capsulitis, and suggested Lyrica for the PN. The capsulitis has resolved, but the tingling in my feet and thigh is still present. I didn't and won't take the Lyrica, after reading the side effects.

I'm going to give the B-12 a go.

MelodyL
09-25-2011, 04:35 PM
Hi Kate:

I just took this excerpt from your posting.

"I do take the benfo and a b6."

I was always under the impression that people with neuropathy should NEVER take B-6

Mrs. D ??????

Melody
"

mrsD
09-25-2011, 04:41 PM
Some B6 is necessary. Extremely high doses in the gram range for a long time can cause a neuropathy. (but that was using pyridoxine, which is not active).

Very low B6 (a deficiency) also causes neuropathy.

This poster, Mel, is using medications that deplete B6, so her need is greater than those not using those medications.

MelodyL
09-25-2011, 04:45 PM
Some B6 is necessary. Extremely high doses in the gram range for a long time can cause a neuropathy. (but that was using pyridoxine, which is not active).

Very low B6 (a deficiency) also causes neuropathy.

This poster, Mel, is using medications that deplete B6, so her need is greater than those not using those medications.

See why I ask questions?
Because today I learned something new....from YOU

Thanks so much.

Take care

Melody

MelodyL
09-25-2011, 08:41 PM
Wow - what a fascinating and informative thread. Thank you all for your help.

I had my first visit with a new MD, and had CBC, Vit D, and thyroid testing a few weeks ago. My D was "in the toilet", using his words. (33 out of 32 to 100 mass/volume test range.) This surprised me as I do use a multi vitamin and mineral supplement, and drink OJ with Calcium and D almost every day. I also try to eat well, with lots of veges, fruits, whole grains, meats, and dairy. At the moment, I don't avoid any food groups. However, he suggested an elimination diet, which I will start after I get back from vacation in a few weeks.

After reading on this thread, I wonder if my B-12 is also low. I didn't get a copy of my bloodwork; I keep forgeting to do that. I will do that this week!

It seems that if I am not absorbing the D I've been taking, maybe I am not absorbing other nutrients either.

I three meals plus snacks, sit at a desk most of the day, and am stuck at almost 115 pounds, which is thin for 5' 5".

I started having PN symptoms early this year, though I didn't know that's what it was. I went to a podiatrist when my feet hurt so much I was using crutches and couldn't drive. He diagnosed capsulitis and PN, and gave me cortizone injections in my feet for the capsulitis, and suggested Lyrica for the PN. The capsulitis has resolved, but the tingling in my feet and thigh is still present. I didn't and won't take the Lyrica, after reading the side effects.

I'm going to give the B-12 a go.


Hi, I started taking 5000 of the Methyl B-12 over 2 years ago. Best thing I ever did for my neuropathy. I now take it about 3 times a week.

Hope it works for you the same way it worked for me.

Take care

Melody

zeeclass6
09-25-2011, 10:55 PM
I have also been suffering from capsilitus in my two big toes for the past 8 weeks! (Diagnosed via an MRI). I wore some new shoes (flats, with my orthotics -- go figure!!!) and apparently that caused it (never had it ever before). The shoes looked sensible and good (cute maryjanes made by Aetrex) but for some reason they made my big toes hurt after wearing them for only a couple of days for a few hours each day. The whole thing is really strange. My podiatrist doesn't know why it happened.

Now I have to wonder if my sloooooow healing of the capsilitus is due to B-12 deficiency. (I know for sure it's not gout -- I don't have gout). I'm getting very impatient from sitting/lying around for 8 weeks waiting for my stupid toes to stop hurting (left is worse than the right), and am considering the cortisone shots. Hearing that the shots worked for you is encouraging to me. I need to start exercising again, and this inability to walk well has really been annoying. I can only wear one pair of shoes -- my sneakers with my orthotics! Everything else hurts my big toe, even my wooly slippers which are usually very comfortable! It was so embarrassing recently to go to a professional meeting all dressed up, but wearing my dirty old sneakers, limping around.

Like you, I eat a well-rounded sensible diet. Unlike you, I'm about 15 pounds overweight. But anyway, my Vitamin D was in the toilet as well a few years ago. I now take 4,000 IU daily and my level is around 50 now. Interestingly, my 15-year-old daughter had a blood test recently and we found that her vitamin D level was 35. I need to talk to her pediatrician to see if she should also be taking a supplement. She eats a lot of dairy and gets sun and is healthy except for some anxiety issues (the reason for the blood test) -- no reason for her to be borderline deficient!!! I think that everyone should have their Vit D and B vitamins checked. It's so important!

Good for your for refusing the Lyrica. A neurologist wanted to put me on that for some sciatic pain I had been experiencing and I said NO WAY. I just didn't have the type of symptoms that were necessary to take a drug like that -- especially given the possible side effects. In that case, a little acupuncture and some skilled shiatsu massage solved the problem instead of drugs.


Wow - what a fascinating and informative thread. Thank you all for your help.

I had my first visit with a new MD, and had CBC, Vit D, and thyroid testing a few weeks ago. My D was "in the toilet", using his words. (33 out of 32 to 100 mass/volume test range.) This surprised me as I do use a multi vitamin and mineral supplement, and drink OJ with Calcium and D almost every day. I also try to eat well, with lots of veges, fruits, whole grains, meats, and dairy. At the moment, I don't avoid any food groups. However, he suggested an elimination diet, which I will start after I get back from vacation in a few weeks.

After reading on this thread, I wonder if my B-12 is also low. I didn't get a copy of my bloodwork; I keep forgeting to do that. I will do that this week!

It seems that if I am not absorbing the D I've been taking, maybe I am not absorbing other nutrients either.

I three meals plus snacks, sit at a desk most of the day, and am stuck at almost 115 pounds, which is thin for 5' 5".

I started having PN symptoms early this year, though I didn't know that's what it was. I went to a podiatrist when my feet hurt so much I was using crutches and couldn't drive. He diagnosed capsulitis and PN, and gave me cortizone injections in my feet for the capsulitis, and suggested Lyrica for the PN. The capsulitis has resolved, but the tingling in my feet and thigh is still present. I didn't and won't take the Lyrica, after reading the side effects.

I'm going to give the B-12 a go.

glenntaj
09-26-2011, 06:58 AM
--for various people in this thread:

AlwaysLearning, if it can be confirmed that you have low levels of D, B's, etc., for no particular reason, malabsorption should be investigated, and the most obvious tests for that are for parietal antibodies and for anti-gliadin and anti-transglutaminase antibodies associated with celiac/gluten sensitivity; both of these are more common than most doctors generally think and can lead to malabsorption of nutrients in the gastric tract.

Also, as regards skin biopsy, the ranges for what constitutes a "definite" small-fiber neuropathy were somewhat arbitrarily established during the original MacArthur research protocols at Johns Hopkins; specifically, intraepidermal nerve fiber density lower than the 5th percentile or higher than the 95th, compared to the original "normal" control groups, was considered definite evidence of small-fiber syndromes. There is a lot of variation in what constitutes normal in an individual, however. People's nerve fiber density does tend to decline with age, even in people without symptoms. And it's hard to know what a person's "starting point" was by the time they have symptoms and get a skin biopsy. (Someone may have declined from a "normal for them" 70th percentile reading to the 25th percentile, for example--but this would still be read as "normal density" on a skin biopsy enumeration, as it would be almost impossible to have an individual pre-neuropathy figure to compare to.) This is why savvy neurologists won't just go by the numbers--they'll ask for reports of condition of the nerve fibers observed--is there excessive branching, swelling, deteriorated fibers evident--and use a fuller clinical picture, including symptoms, to determine if there is a small-fiber neuropathy.

AlwaysLearning
09-26-2011, 01:39 PM
Hi, I started taking 5000 of the Methyl B-12 over 2 years ago. Best thing I ever did for my neuropathy. I now take it about 3 times a week.

Hope it works for you the same way it worked for me.

Take care

Melody

My multi has B-12 in the methyl flavor, but I have been taking it with food:(
I'm hopeful I'll have similar results as you.
Thanks for your comment.

AlwaysLearning
09-26-2011, 02:04 PM
I have also been suffering from capsilitus in my two big toes for the past 8 weeks! (Diagnosed via an MRI). I wore some new shoes (flats, with my orthotics -- go figure!!!) and apparently that caused it (never had it ever before). The shoes looked sensible and good (cute maryjanes made by Aetrex) but for some reason they made my big toes hurt after wearing them for only a couple of days for a few hours each day. The whole thing is really strange. My podiatrist doesn't know why it happened.


Now I have to wonder if my sloooooow healing of the capsilitus is due to B-12 deficiency. (I know for sure it's not gout -- I don't have gout). I'm getting very impatient from sitting/lying around for 8 weeks waiting for my stupid toes to stop hurting (left is worse than the right), and am considering the cortisone shots. Hearing that the shots worked for you is encouraging to me. I need to start exercising again, and this inability to walk well has really been annoying. I can only wear one pair of shoes -- my sneakers with my orthotics! Everything else hurts my big toe, even my wooly slippers which are usually very comfortable! It was so embarrassing recently to go to a professional meeting all dressed up, but wearing my dirty old sneakers, limping around.

Like you, I eat a well-rounded sensible diet. Unlike you, I'm about 15 pounds overweight. But anyway, my Vitamin D was in the toilet as well a few years ago. I now take 4,000 IU daily and my level is around 50 now. Interestingly, my 15-year-old daughter had a blood test recently and we found that her vitamin D level was 35. I need to talk to her pediatrician to see if she should also be taking a supplement. She eats a lot of dairy and gets sun and is healthy except for some anxiety issues (the reason for the blood test) -- no reason for her to be borderline deficient!!! I think that everyone should have their Vit D and B vitamins checked. It's so important!

Good for your for refusing the Lyrica. A neurologist wanted to put me on that for some sciatic pain I had been experiencing and I said NO WAY. I just didn't have the type of symptoms that were necessary to take a drug like that -- especially given the possible side effects. In that case, a little acupuncture and some skilled shiatsu massage solved the problem instead of drugs.

The capsulitis became very apparent when I got off my mare, after dropping my foot the last 6-8 inches to the ground. A fews weeks before that, I had tried a new pair of hiking boots. I laced them pretty tight, and used a lace locking tie to try to avoid major heel slippage. I only wore them about 30 minutes, but my feet didn't feel the same after that. I think I caused or exacerbated both issues with the tight shoes.

My sneakers made my feet hurt more. They were comfy, but made my feet fatigued after a while. Like, they didn't bend in the same place as my feet? Maybe that was the issue with your mary janes. I got a new pair of sneakers which are more comfy. I also got a pair of Teva sandals, with the adjustable velcro across the toe, instep, and heel. I made the straps as loose as I could, so they wouldn't hug my feet. Pretty sloppy, but I wore them that way for weeks. They have some arch support, and some tread. I think they helped, or at least didn't make issues worse.

If you do get the cortisone injections, be aware they hurt plenty. But, it's just during the actual injection. The second round of injections is less painful, as hopefully you have healed some. Hope you get relief soon.

AlwaysLearning
09-26-2011, 02:10 PM
--for various people in this thread:

AlwaysLearning, if it can be confirmed that you have low levels of D, B's, etc., for no particular reason, malabsorption should be investigated, and the most obvious tests for that are for parietal antibodies and for anti-gliadin and anti-transglutaminase antibodies associated with celiac/gluten sensitivity; both of these are more common than most doctors generally think and can lead to malabsorption of nutrients in the gastric tract.

Also, as regards skin biopsy, the ranges for what constitutes a "definite" small-fiber neuropathy were somewhat arbitrarily established during the original MacArthur research protocols at Johns Hopkins; specifically, intraepidermal nerve fiber density lower than the 5th percentile or higher than the 95th, compared to the original "normal" control groups, was considered definite evidence of small-fiber syndromes. There is a lot of variation in what constitutes normal in an individual, however. People's nerve fiber density does tend to decline with age, even in people without symptoms. And it's hard to know what a person's "starting point" was by the time they have symptoms and get a skin biopsy. (Someone may have declined from a "normal for them" 70th percentile reading to the 25th percentile, for example--but this would still be read as "normal density" on a skin biopsy enumeration, as it would be almost impossible to have an individual pre-neuropathy figure to compare to.) This is why savvy neurologists won't just go by the numbers--they'll ask for reports of condition of the nerve fibers observed--is there excessive branching, swelling, deteriorated fibers evident--and use a fuller clinical picture, including symptoms, to determine if there is a small-fiber neuropathy.

Glenntaj,

I have never looked into celiac/gluten sensitivity, but I may have a reason to now. I will discuss this with my doc.

Thank you.

MelodyL
09-26-2011, 02:15 PM
My multi has B-12 in the methyl flavor, but I have been taking it with food:(
I'm hopeful I'll have similar results as you.
Thanks for your comment.

It should be taken on an empty stomach. I began with 1000 once a day and after one week I knew I had to take the 5000. I started with iherb.com and now we get all our stuff from Puritans because of the buy 2 get 3 free offers.

So far, so good.

Wishing you well!!!

Melody

zeeclass6
09-26-2011, 11:06 PM
Just wondering -- is it better to split up your B-12 dose during the day, or take it all at once in the morning? I just upped my dose to 5,000 mg of methyl and wasn't sure if I should cut it in half and take half in the morning on an empty stomach, and half in the afternoon two hours after lunch.

In theory, could taking some B-12 in the early afternoon give you more energy for late in the afternoon? Or does it really not matter?

mrsD
09-27-2011, 05:00 AM
It is better to take all at once... on empty stomach.

If you have intact intrinsic factor this is less of an issue.

But those who show up here with lows, have some problem or they would not be low and have the neuro symptoms.

When intrinsic factor is not working (for whatever reason), the only way B12 is absorbed is by passive osmosis thru the lining of the GI tract. The higher the concentration present, the more that will get thru. 5mg will result in more being absorbed, which is still a very small amount. 1mg also is absorbed, but 5 times less than the larger dose.

Some things have receptors controlling absorption, or a biochemical barrier. Zinc, magnesium, calcium, carnitine, Neurontin, are examples of limited absorption, needing perhaps divided doses.

ger715
09-29-2011, 11:41 AM
Yes, I think all 3 are helpful for some people. R-lipoic helps with mitochondrial functions, and Benfotiamine is a cofactor in
metabolism carbohydrates and of certain dehydrogenase enzymes ...one of which metabolizes alcohols and aldehydes.

Mrs. D. Do you think adding Magnesium lactate and COQ10 acetyl L carnitine with the Methyl B12 lmg, R-Lipoic Acid 100mg and Benfotiamine 150 mg that I am already taking would round out a regimen of vitamins/supplements for aiding the possible regenerating of the nerves?

mrsD
09-29-2011, 12:03 PM
Magnesium, yes, is always helpful. It is involved in hundreds of other enzymes in your body as well, including the heart, and metabolism of essential fatty acids.

All you mention are fairly side effect free, and cost is only the factor that some use to decide upon. CoQ-10 with good absorption is costly, and so is acetyl carnitine. Puritan's tends to have Q-sorb CoQ-10 at reasonable prices. Puritan's sale of buy one and get 2 free ends tomorrow. They will then probably go back to buy 2 get 3 free. I just ordered more B12 and D for us today in fact.

R-lipoic has a long history of studies as Alpha lipoic for neuropathy, and so does the benfotiamine. So yes, all are quite good and worth the cost. Over time you may find some more effective than others, and make adjustments. Usually this is when improvements occur, and people tend to drop one thing here or there and see if the improvement holds.

mrsD
09-29-2011, 12:17 PM
Today I am searching B12 and immunity (mostly for my cat), but I found these papers which are useful for us, here:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2532799/table/T1/#TF1-4

This one above is a chart of various oral doses and their absorption.

This one is a discussion on which oral doses helped elderly patients the most:
http://www.ncbi.nlm.nih.gov/pubmed/15911731
RESULTS:

Supplementation with cyanocobalamin in daily oral doses of 2.5, 100, 250, 500, and 1000 mug was associated with mean reductions in plasma methylmalonic acid concentrations of 16%, 16%, 23%, 33%, and 33%, respectively. Daily doses of 647 to 1032 mug of cyanocobalamin were associated with 80% to 90% of the estimated maximum reduction in the plasma methylmalonic acid concentration.
CONCLUSION:

The lowest dose of oral cyanocobalamin required to normalize mild vitamin B(12) deficiency is more than 200 times greater than the recommended dietary allowance, which is approximately 3 mug daily.

PMID:
15911731
[PubMed - indexed for MEDLINE]



And this review article from 2009:
Int J Lab Hematol. 2009 Feb;31(1):1-8. Epub 2008 Nov 19.
Oral cobalamin (vitamin B(12)) treatment. An update.
Andrès E, Dali-Youcef N, Vogel T, Serraj K, Zimmer J.
Source

Department of Internal Medicine, Diabetes and Metabolic Diseases, Hôpitaux Universitaires de Strasbourg, Strasbourg, France. andres@chru-strasbourg.fr
Abstract

The objective of this review was to evaluate oral cobalamin (vitamin B(12)) therapy in adult and elderly patients, from the perspective of a hematologist. PubMed was systematically searched for English and French articles published from January 1990 to January 2007. Data from our working group, the 'Groupe d'étude des carences en vitamine B(12)des Hôpitaux Universitaires de Strasbourg', have also been included. Several prospective studies in well-determined population (n = 4), prospective randomized studies (n = 3) and a systematic review by the Cochrane group (n = 1) provide evidence that oral cobalamin therapy may adequately treat cobalamin deficiency, particularly hematological abnormalities or manifestations. These studies suggest that at least 1000 microg/day of oral cyanocobalmin are needed for pernicious anemia and a mean daily dose of 250 microg for food-cobalamin malabsorption. This present review confirms the previously reported efficacy of oral cobalamin treatment in adult and elderly patients.

PMID:
19032377
[PubMed - indexed for MEDLINE]

You may copy these citations and give them to your doctor if he/she needs educating!

ger715
09-29-2011, 07:35 PM
Magnesium, yes, is always helpful. It is involved in hundreds of other enzymes in your body as well, including the heart, and metabolism of essential fatty acids.

All you mention are fairly side effect free, and cost is only the factor that some use to decide upon. CoQ-10 with good absorption is costly, and so is acetyl carnitine. Puritan's tends to have Q-sorb CoQ-10 at reasonable prices. Puritan's sale of buy one and get 2 free ends tomorrow. They will then probably go back to buy 2 get 3 free. I just ordered more B12 and D for us today in fact.

R-lipoic has a long history of studies as Alpha lipoic for neuropathy, and so does the benfotiamine. So yes, all are quite good and worth the cost. Over time you may find some more effective than others, and make adjustments. Usually this is when improvements occur, and people tend to drop one thing here or there and see if the improvement holds.


Mrs. D, I just looked up Puritan's Pride and not sure what kind of Magnesium I should order, also the mg's as well. The same with the COQ10; not sure which to order. Thanks for all your input. I really do appreciate all you do for us PN'ers.

mrsD
09-30-2011, 05:22 AM
This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

While Puritan's is good for many things, they don't have much in the way of magnesium to choose from.

Using a chelate is best. Avoidance of Oxide type important. I do not like aspartate, because aspartate stimulates pain receptors (NMDA receptor).

Some people get laxative response from magnesium. So using a delayed release for them is helpful... SlowMag --generic called Mag64. Studies have shown this form is absorbed well.
http://www.google.com/products/catalog?hl=en&cp=5&gs_id=h&xhr=t&q=mag64&biw=1173&bih=764&gs_upl=&bav=on.2,or.r_gc.r_pw.&um=1&ie=UTF-8&tbm=shop&cid=8229731293429079367&sa=X&ei=npeFTtGpLojq0gHv0djEDw&sqi=2&ved=0CE0Q8wIwAg
I get my Mag 64 at Costco for about 5.00 But not all Costcos will have it on their special OTC shelf. The Costcos where it has been requested typically have it. WalMart also carries it and the brand Slow Mag ($9.99)

Ionic Fizz is also good and I have used it too. It is very fast acting, and you control dose with the little scoop provided. But it costs a bit more money. Some people use Natural Calm which is a powder of the citrate. But too much=laxative action.

You can use the topical lotion which many of us now use with success:
http://www.cvs.com/CVSApp/catalog/shop_product_detail.jsp?filterBy=&skuId=732566&productId=732566&navAction=push&navCount=1&no_new_crumb=true

I find this at my local CVS stores. It may be in the first aid section with the epsom salts, or in the pain section, near the Thermacare patches and Tylenol etc products.

The lotion is the easiest to tolerate by far, is unscented and penetrates quickly into the skin. My husband uses it too for muscle strains and stiffness.

mrsD
09-30-2011, 06:05 AM
This paper is getting alot of attention in the press. There are many links to the media on the net now. However, those media links do not last long...so I found the original abstract:

Neurology. 2011 Sep 27;77(13):1276-82.
Vitamin B12, cognition, and brain MRI measures: A cross-sectional examination.
Tangney CC, Aggarwal NT, Li H, Wilson RS, Decarli C, Evans DA, Morris MC.
Source

Department of Clinical Nutrition 425 TOB, Rush University Medical Center, 1700 West Van Buren St., Chicago, IL 60612 ctangney@rush.edu.
Abstract
OBJECTIVE:

To investigate the interrelations of serum vitamin B12 markers with brain volumes, cerebral infarcts, and performance in different cognitive domains in a biracial population sample cross-sectionally.
METHODS:

In 121 community-dwelling participants of the Chicago Health and Aging Project, serum markers of vitamin B12 status were related to summary measures of neuropsychological tests of 5 cognitive domains and brain MRI measures obtained on average 4.6 years later among 121 older adults.
RESULTS:

Concentrations of all vitamin B12-related markers, but not serum vitamin B12 itself, were associated with global cognitive function and with total brain volume. Methylmalonate levels were associated with poorer episodic memory and perceptual speed, and cystathionine and 2-methylcitrate with poorer episodic and semantic memory. Homocysteine concentrations were associated with decreased total brain volume. The homocysteine-global cognition effect was modified and no longer statistically significant with adjustment for white matter volume or cerebral infarcts. The methylmalonate-global cognition effect was modified and no longer significant with adjustment for total brain volume.
CONCLUSIONS:

Methylmalonate, a specific marker of B12 deficiency, may affect cognition by reducing total brain volume whereas the effect of homocysteine (nonspecific to vitamin B12 deficiency) on cognitive performance may be mediated through increased white matter hyperintensity and cerebral infarcts. Vitamin B12 status may affect the brain through multiple mechanisms.

PMID:
21947532
[PubMed - in process]

What this paper discusses is the MMA test which is specific to show if B12 is being utilized. In general it pertains to the levels of B12 also but only indirectly. A low B12 reading will raise MMA levels. MMA test is slowly being accepted for elderly screening for low B12 activity today.

This is one media link: I don't expect it to be active forever, but I'll post it because it is in the news today:
http://www.wbaltv.com/r/29307110/detail.html

MelodyL
09-30-2011, 08:31 AM
This paper is getting alot of attention in the press. There are many links to the media on the net now. However, those media links do not last long...so I found the original abstract:



What this paper discusses is the MMA test which is specific to show if B12 is being utilized. In general it pertains to the levels of B12 also but only indirectly. A low B12 reading will raise MMA levels. MMA test is slowly being accepted for elderly screening for low B12 activity today.

This is one media link: I don't expect it to be active forever, but I'll post it because it is in the news today:
http://www.wbaltv.com/r/29307110/detail.html


Hi.

I've been taking the Malic Acid from Puritan's pride.

For years now.

The bottle says 825 mg 180 coated tablets
and this consists of Magnesium (from Magnesium Malage) 50 mg
and Malic Acid (from Magnesium Malate 825 mg


I hope this is good because I just got my blood work done, and had an exam and Dr. Fred says I'm EXCELLENT!!!

So....so far so good.

I wonder if it's all the green stuff I eat every day.

I'm probably filled with clorophyll.

lol

Melody

ger715
09-30-2011, 10:28 AM
Thanks Mrs. D for the info on the Magnesium. This will be very helpful. I am also at a loss on choosing the COQ10. Do you have any suggestions?

Not sure I can use the Epsom Salt Lotion. My feet,ankles and legs are the bigggest problem with burning and pain. I have Statsis Dermatatis in those areas; primarily the Feet and ankles, starting to go to the knees. I use a petroleum jelly because the skin is so thin and discolored with brown, red and purple under the skin and some on top. This is prone to ulceration and the jelly will help the skin from drying and cracking. Unfortunately this adds to the PN pain.

mrsD
09-30-2011, 10:57 AM
You don't have to apply it to your targets....some people do when they can.

If you apply to intact skin the magnesium will get into you anyway and travel around your body. This is an alternative to taking oral if you are prone to being loose.

I discovered it will sting, if there is any skin irritation, because it does have a "salt" in it...a magnesium salt.
The lotion itself is moisturizing I have found as well.

Puritan's CoQ-10 contains Q-sorb to help improve absorption.
That is one place.
Another is a more fixey type to be found here: Q-gel.
http://www.epic4health.com/
These tend to cost much more, but reading the pages on them might be useful. They also have Ubinquinol which is a concentrated form that allows for a lower dose.
There are some on iherb.com by Doctor's Best...that have Bioperine in them, but if you are taking RX drugs I don't think Bioperine has been cleared as safe with RX drug absorption (may increase it).

@Melody--- the magnesium malate is fine...it is just such a huge pill, many people may not like it.

ger715
10-06-2011, 11:05 AM
Mrs. D, Was recommending the methyl B12 to a friend yesterday. I told her it was best to take on empty stomach; at least 2 hrs. before and 1 hr. afterwards. She asked if it was okay to use water or liquid during this time. I do take a drink of water at times. I, myself am clear on this either. Is taking water in between those time make a difference? Thanks

mrsD
10-06-2011, 11:12 AM
Yes, I do tea with mine sometimes.

I put the 5mg methyl B12 for my cat in a bit of whipped cream, which she will take easily. It is working for her that way, but she is only 8 lbs compared to humans. She is really perking up since I started this, and the vet said to continue. Saves me much $$ from the shots they were going to sell me.

It is the FIBER and volume of the food, that acts like a sponge to block passive absorption of the B12. Some liquid, seems to be okay.

EddieF
10-06-2011, 05:51 PM
Was said to post Vit D here so here goes..
Today's MS support group meeting, one guy's taking 10,000 i.u./day = level 30
I take 2000i.u./day & my level's holding 90's. Everyone's different, you have to get tested & not go by dose. 8000iu's had me over 120.
I also told all to try 500mcg's B12 cause I heard many say they've been tired lately. The guy taking 10,000iu's of D is starting B12 shots next week.

polygon
10-10-2011, 12:08 AM
Hello, just found this forum while researching.
I got my blood test results the other day.
My B12 levels were at 100.
Now that I'm researching, I'm very concerned about it. Started taking 2mg of B12 two days ago.
My doctor didn't recommend a brand of supplement, tell me how much to take, or suggest injections, nothing. My iron is also very low.
I'm experiencing pretty much every symptom associated with b12 deficiency, and have been for at least a year. Been vegetarian for 8 years, because of moral opinions and a health condition.

How long will it take to stop the symptoms? My parathesia in my legs is a little painful. I thought it was my multiple lipomas sitting on the nerve, but they aren't, so I assume it's a symptom. Kind of worried that my levels have been low for a long time, but is it possible that something like an infection could have lowered them a lot as well? I had pneumonia from june until the middle of july this year, and since then the chronic fatigue, tingling, spasms and twitches have all gotten much, much worse.

Thanks if you read this.

mrsD
10-10-2011, 07:49 AM
I think you should be more aggressive and use 5mg orally daily on an empty stomach. Brands that people have used here that work include, Jarrow's and Puritan's Pride.

iherb.com
Puritans pride
Swanson's
Vitacost

All have a form of methylcobalamin and you can choose what you want. I'd stick with the active methyl type as it works better.

Expect this to take a few months, depending on how long you were low.
The iron questions should be directed to your doctor.
Dosing and how long to take it depends on how low you are.
Taking too much is problematic and too little won't help you much.

If you are anemic, expect to feel fatigued at first when you start the B12. In anemic patients, there may be a short time when your potassium gets low as new red blood cells are made.
Eating potassium rich foods can help during this time.

Hello, just found this forum while researching.
I got my blood test results the other day.
My B12 levels were at 100.
Now that I'm researching, I'm very concerned about it. Started taking 2mg of B12 two days ago.
My doctor didn't recommend a brand of supplement, tell me how much to take, or suggest injections, nothing. My iron is also very low.
I'm experiencing pretty much every symptom associated with b12 deficiency, and have been for at least a year. Been vegetarian for 8 years, because of moral opinions and a health condition.

How long will it take to stop the symptoms? My parathesia in my legs is a little painful. I thought it was my multiple lipomas sitting on the nerve, but they aren't, so I assume it's a symptom. Kind of worried that my levels have been low for a long time, but is it possible that something like an infection could have lowered them a lot as well? I had pneumonia from june until the middle of july this year, and since then the chronic fatigue, tingling, spasms and twitches have all gotten much, much worse.

Thanks if you read this.

zeeclass6
10-14-2011, 02:17 AM
A short update:

I'm finally getting a blood test on Monday the 17th (for B-12, B-6 and many other usual things for an annual exam), and haven't taken any of my vitamins (or fish oil) since Saturday. So it has been 6 days since I have taken my usual vitamins and supplements.

Before Saturday, I was really feeling great -- better than I have in a LONG time -- mainly, i think, because of the B-12 I have been taking since mid-August. (My B-12 level in mid-August was 398).

Now, 6 days after discontinuing my vitamins in preparation for the blood test, my depression is starting to come back. I feel it on a very organic level -- the way I perceive things, my ability to cope with stress, my general cognitive abilities -- are all taking a nosedive. I know that I can hang in there a few days until my test, but wow -- I didn't think that stopping my vitamins, especially the B-12 and high EPA fish oil, would impact me in such a specific way in such a short amount of time!

I find this very interesting. In addition to the blood tests, I will be doing a mail-in urine test for Pyroluria. Frankly I don't think that I have Pyroluria, but I strongly suspect that my 15-year-old daughter does. She will be doing the urine test in about two weeks. She has an anxiety disorder and when I read about Pyroluria, it seemed to describe what she was going through. Pyruloria is a condition where the body doesn't properly utilize B-6 or zinc. Interestingly, she tells me that if she doesn't take her B-complex vitamins, she doesn't feel as good. She will also get a blood test for B-12 and B-6. She had some other blood tests a few months ago and they were all normal (including the thyroid panel).

Anyway, I can't wait to get back the results of my B-12 test and see how my oral supplementation has improved my level, or not. Feeling foggy-headed and mentally dull sure isn't any fun.

By the way, do you guys know whether B-12 helps the body heal better or faster? I'm getting some oral surgery at the end of the month (gum grafting) and I wonder how the B vitamins affect the speed or efficiency of healing.

mrsD
10-14-2011, 02:25 AM
We'll all be waiting for your results. ;)

zeeclass6
10-19-2011, 03:46 AM
I have a question about B-12 and meds for acid reflux.

I know that PPI drugs like Prilosec interfere with B-12 absorption. So do acid reducers, like Zantac. Since I've found this out, I try to avoid taking anything but some Tums from time to time.

Anyway, in this past week my acid reflux has suddenly gotten really bad, out of the blue. Tonight I just couldn't stand it anymore and I had to take a Zantac. It really helped. I have spent the last several days having horrible reflux, belching, a lot of gas, and a tender bloated belly.

At what point do acid reducers like Zantac interfere with B-12? If I take my B-12 in the morning, and then wind up taking a Zantac 4 or more hours later, is that OK?

I'm very concerned about screwing up the B-12 level I have worked so hard to build up in the past few months.

As to the reason for the reflux -- I'm really not sure. In the past, antibiotics have caused it, and after a while it died down. But lately I have noticed that my lactose intolerance has gotten worse and my reflux has returned. I haven't been on any antibiotics for the past year. I'm avoiding most dairy and taking a Lactaid pill with any meal or snack that has any dairy in it. Even yogurt gives me a problem (it didn't used to).It has been rough. I tried drinking Kefir a couple of weeks ago (and took a Lactaid pill just in case) and boy, that did NOT agree with me. Terrible gas, really disgusting. I have read that Kefir is a wonderful pro-biotic, but maybe it's just not for me. I have no interest in trying to ferment my own, BTW.

My recent blood test included Celiac. Sometimes I wonder if these symptoms aren't part of something else. I'm tempted to see a naturopath to try to straighten out my digestion. Last year I had a colonoscopy (welcome to age 50, LOL) and it was 100% normal. The weird thing about the reflux is that it seems to come and go. For months things are perfectly normal, then all of a sudden it just gets bad for a while.

I appreciate your advice on B-12 and acid reducers, or any other insight you can offer.

mrsD
10-19-2011, 05:14 AM
This is the skinny on acid blockers:

1) they reduce acid in the stomach by either of two ways... by blocking the proton pump (Prilosec/Prevacid etc) or by blocking the H2 receptor (Zantac/Pepcid etc).

2) Intrinsic factor needs acid to work and bind B12 from food.
So constant use of these acid blockers, or a natural decline in acid (which happens when we age) called achlorhydria... decreases the intrinsic factor ability. The normal amount in food daily of B12 is about 2micrograms or so, and intrinsic factor is necessary for such small amounts.

3) Also acid blocking drugs impair your ability to digest protein.
The protein normally is broken up by acid in the stomach. When this fails, due to acid being not present, the protein moves on into the intestines and colon and FERMENTS...creating gas, bloating and diarrhea. Your dairy problem may be this, and not lactose intolerance.

You can still take B12 in a massive dose 5mg a day on an empty stomach. You do not need intrinsic factor for these high doses, since at 5mg some will be absorbed PASSIVELY in the small intestine. The presence of food, will block this type of absorption.

You can still take your B12, but if you continue with acid blocking drugs, and you will continue with gas, bloating and all the rest of the GI disturbances from undigested protein in your food.

As far as the Kefir goes, try a small bit daily in the beginning. 1-2 ounces and you may get the benefit of the probiotics and not have the gas from the dairy protein that is in it. Some people find the whole fat version better in this regard. My local Kroger's only carries the low fat types. As you build up the new probiotics in the bowel, the gas may improve slowly so you can consume more. I tend to have 4 ounces-6ounces once a day. I have it as a dessert after dinner, or as a snack around 11am if I get up early and have early breakfast. I was having massive gas, bloating and nausea this summer and fall, and within 3 days of Kefir it was all gone! A quart is lasting me around 5-6 days at the rate I am drinking it now. But it is up to you.

Acid blocking drugs really upset the body in serious ways. It may take some time to get your bowel back to normal.

zeeclass6
10-19-2011, 11:41 AM
Mrs. D, thank you for all your knowledge!

I suppose if I take a Zantac once in a while, or only for a few straight days, it will be OK as long as I keep on top of taking the B-12 in the morning.

Approx. 5 years ago I was on a PPI drug for several months. My doctor never mentioned the B-12 thing to me. That might have been when my B-12 problem began. I understand it so much better now....I was on Augmentin for a bronchial and sinus infection, and afterward developed horrible reflux. Tested negative for H. Pylori. Went on Aciphex. Had an upper endoscopy, which was normal. Now looking back I understand that the antibiotic probably killed a bunch of of the good bacteria (despite me eating yogurt), and that is probably what caused the reflux in the first place. These days I refuse to take Augmentin unless it's absolutely necessary.

As a side note....I'd suffered with a lot of sinus infections and coughs. To make a long story short, years later I found out that I had a benign tumor in my sinuses! That was the cause of me getting so sick all the time (not allowing proper sinus drainage). Since the tumor was removed, I've been wonderfully normal....nowadays if I catch a cold, I recover in just a few days like a normal person and rarely develop a cough anymore!

I haven't seen full-fat kefir in any stores yet. Maybe my local health food store would have it. You reminded me that with lactose intolerance, lower fat dairy products make it worse. Which is why I don't have too much of a problem when I eat high fat premium ice cream!

I have been wondering whether my problem lately deals with milk protein versus lactose. The thing is, it seems that gastro doctors aren't well equipped to figure this out. If it can't be fixed with pharmceuticals or surgery, they seem to be clueless.

I'll seek out a higher fat kefir and try drinking it in smaller quantities. Everything I read about kefir says that it's very good for digestive problems and that it can actually cure lactose intolerance (or make it a lot better). Not really sure about the "curing" part, since the reason a person becomes intolerant is the lack of lactase enzyme. Maybe somehow the good bacteria restore that ability to produce the enzyme???

mrsD
10-19-2011, 11:49 AM
I believe that the whole milk Kefir, is also lactose free (99%).
Their website at Lifeway gives lots of facts and I found it interesting.

My low fat type is so thick and rich, I can't imagine what the whole milk fat one would be like! ;)

If you can get the organism balance in your GI tract more balanced you may not be dairy intolerant anymore. But there are people who are casein intolerant, but then ice cream would bother you!

Cow's milk contains casein and this can be allergenic in its own right. Lactose intolerance means you may have lost the enzyme that breaks down lactose. Lactose would then be fermented causing gas, bloating and diarrhea. So it can be confusing since both problems give similar symptoms.

AlwaysLearning
10-20-2011, 08:51 PM
zeeclass6,
So Delicious has a cultured coconut milk drink and a cultured "yogurt" made from coconut milk. The drink has about 10 probiotics, as does kefir. I just learned of them a few days ago, and am going to town tomorrow or Saturday to pick some up. So Delicious' website is turtlemountain.com I think. I am on an elimination diet, and am really missing my daily yogurt:(, so I'm looking forward to the coconut substitute.

Mrs. D, thank you for all your knowledge!

I suppose if I take a Zantac once in a while, or only for a few straight days, it will be OK as long as I keep on top of taking the B-12 in the morning.

Approx. 5 years ago I was on a PPI drug for several months. My doctor never mentioned the B-12 thing to me. That might have been when my B-12 problem began. I understand it so much better now....I was on Augmentin for a bronchial and sinus infection, and afterward developed horrible reflux. Tested negative for H. Pylori. Went on Aciphex. Had an upper endoscopy, which was normal. Now looking back I understand that the antibiotic probably killed a bunch of of the good bacteria (despite me eating yogurt), and that is probably what caused the reflux in the first place. These days I refuse to take Augmentin unless it's absolutely necessary.

As a side note....I'd suffered with a lot of sinus infections and coughs. To make a long story short, years later I found out that I had a benign tumor in my sinuses! That was the cause of me getting so sick all the time (not allowing proper sinus drainage). Since the tumor was removed, I've been wonderfully normal....nowadays if I catch a cold, I recover in just a few days like a normal person and rarely develop a cough anymore!

I haven't seen full-fat kefir in any stores yet. Maybe my local health food store would have it. You reminded me that with lactose intolerance, lower fat dairy products make it worse. Which is why I don't have too much of a problem when I eat high fat premium ice cream!

I have been wondering whether my problem lately deals with milk protein versus lactose. The thing is, it seems that gastro doctors aren't well equipped to figure this out. If it can't be fixed with pharmceuticals or surgery, they seem to be clueless.

I'll seek out a higher fat kefir and try drinking it in smaller quantities. Everything I read about kefir says that it's very good for digestive problems and that it can actually cure lactose intolerance (or make it a lot better). Not really sure about the "curing" part, since the reason a person becomes intolerant is the lack of lactase enzyme. Maybe somehow the good bacteria restore that ability to produce the enzyme???