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07/16/2011 03:47 AM

B12 deficiency; read if you've been sick for YEARS

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Please Read if you've been sick for years...this may help you ubb=get_topic;f=1;t=109279;p=0


LymeNet Contributor

Member # 8095

posted 07-15-2011 03:38 PM

Hi All-

For those who've been sick for years, I want to pass along something that might help you. It will seem simple but it could be incredibly important...

***You might be deficient, severely deficient in B12, and not even know it

***As many of you know, if your B12 levels are deficient, it can cause a lot of neurologic complications

such as tingling or numbness in the hands and feet, weakness, fatigue, depression, muscle aches, joint stiffness, all-over muscle twitching, sore tongue (any of these symptoms could be confused with lyme symptoms)

***Please also understand that A NORMAL SERUM B12 TEST DOES NOT MEAN THAT YOU'RE AREN'T DEFICIENT IN B12 (I wish I had known this years ago)

***A high serum folate level can often mask a B12 deficiency

*** You can have a normal B12 serum level and still test positive for the autoimmune antibodies to intrinsic factor (you need intrinsic factor to absorb B12 from food).

Additionally, you can have normal serum B12 levels and still have pernicious anemia.

This is where your body's immune system is attacking the parietal cells which produce the intrinsic factor..(you need intrinsic factor to absorb B12 from food)

***As you will see from a review of PUBMED, the most accurate measure of B12 levels is the methylmalonic acid test or an elevated homocysteine test...

If these are elevated and you have B12 deficiency symptoms, you are most likely deficient in B12

**As mentioned above, there are antibodies testing you can have to determine if your immune system is attacking its parietal cells which produce the necessary intrinsic factor ....this is NOT an ANA test, but rather, a specific antibodies test

***To date, to my knowledge, there have been no studies conducted on lyme's impact on parietal cells (these are the cells which produce intrinsic factor and gastric acid) which help your body absorb B12 from food...

Could lyme be attacking the parietal cells?

***Could lyme patients' immune systems be attacking the parietal cells??

***Inflammation: We know lyme causes inflammation and perhaps, inflammation of the mucosal lining of the gut, is interfering with proper absorption of B12

***Some antibiotics interfere with the absorption of B12 and alter the intestinal flora

***Anecdotally, Ive noticed that some people who get better on this board have done things to heal the gut...

fight inflammation in the gut...

or absorb B12 (probiotics, Vitamin D, parasite treatment, sublingual B12 or shots)....

Maybe some of these measures are having the impact of: calming the inflammation in the gut, calming the immune system, and creating better absorption of B12

Finally, I think it's a dual attack that may be necessary: Fight the inflmmation/modulate the immune system AND obtain proper nutrient absoprtion (this is why I take higher doses of Vitamin D plus the B12)...

Even though it's from the UK, I think the following link does a good job of summarizing some key points re: B12 deficiency and pernicious anemia; Deficiency.htm

(hope this helps someone).....

Posts: 943 | From Southeast | Oct 2005 |



LymeNet Contributor

Member # 20554

posted 07-15-2011 04:12 PM

I've been giving myself IM shots of B12 weekly and it helps me feel 100x better.

Posts: 112 | From New York | Registered: Jun 2009 | ********************


LymeNet Contributor

Member # 29535

posted 07-15-2011 04:35 PM

There is a great book about this titled, "Could It Be B-12?"

I think everybody should get a uMMA and homocysteine test.

Posts: 857 | From South | Registered: Dec 2010 |



LymeNet Contributor

Member # 14238

posted 07-15-2011 05:02 PM

What does this mean?

***A high serum folate level can often mask a B12 deficiency

My blood test said Folic Acid >24 with reference of >5.38 being ok

Then I see Vitamin B12 measured 949 HI with reference range 211-911.

I thought these levels were good. Now I am confused.

Posts: 231 | From New Jersey | Dec 2007 |



posted 07-15-2011 05:02 PM


Did you have abnormal UMMA or homocysteine when you were tested?? Yes, I've heard that's a great book...thanks for reminding me about it.

Posts: 943 | From Southeast | Registered: Oct 2005


posted 07-15-2011 05:05 PM

Nope. Mine was normal.


Carol in PA

Frequent Contributor (1K+ posts)

Member # 5338

posted 07-15-2011 05:37 PM

Bugg, thank you so much for this.

I've been stressing magnesium and fish oil because they are two of the simplest things people can do for their health, but B12 deficiency is rampant.

It's a complicated subject, and it's difficult to explain to someone WHY they may have the problem.

When I asked my family doctor for B12 injections, he refused.

As for healing the gut, people don't understand how important it is.

When I have suggested A.M.P., they said that it's too expensive. (Aloe Mucilaginous Polysaccharide)Heck, it took me ages to try Kefir.

p.s. When my doc refused to prescribe B12 injections, I tried a couple of sublingual B12's.

I am presently using two.

Now Foods, Instant Energy B12, 75-Packets/5286?at=0

Jarrow Formulas, Methyl B-12, 1000 mcg, 100-Lozenges/129?at=0

Both of these have many pleased reviews.

The Jarrow B12 also comes in a 5000 mcg...look at the first review here. 60-Lozenges/117?at=0

[ 07-16-2011, 12:00 AM: Message edited by: Carol in PA ]

Posts: 4382 | From Lancaster, PA | Feb 2004


posted 07-15-2011 06:39 PM

Cockapoo-The literature doesn't suggest that just because you have a high folate level that you have a B12 deficiency.

Rather, it's saying it can potentially mask a deficiency due to the 'folate trap'.

(In those with B12 deficiency, then, the higher the level of folate, the more likely the person would be to potentially have neurological impairment rather than anemic impairment...

hope this makes sense to you...If not, there's lots of info regarding this in Pubmed....)

Hope this links helps to clarify: falle.htm

[Posts: 943 | From Southeast | Registered: Oct 2005 ******************


posted 07-15-2011 08:14 PM

Thanks Bugg. I am always wishing I had taken biochemistry in college.

Posts: 231 | From New Jersey | Dec 2007



LymeNet Contributor

Member # 30429

posted 07-15-2011 08:19 PM

I am b12 deficient and can vouch for improvement by addressing just that and leaky gut and low magnesium.

That was the first thing we did while waiting for lyme test results.

My migraines decreased in frequency. My GI pain decreased.


Posts: 189 | From FL | Registered: Feb 2011



LymeNet Contributor

Member # 30398

posted 07-15-2011 11:26 PM

Vitamin B12 deficiency can also lead to diminished

mental function, loss of hair, loss of sense of taste, increased chemical sensitivities, and a bunch of other issues.

Nerve mylin cannot be repaired without B12, so it even can reverse some "MS-like" symptoms.

Some find their symptoms "flare" a little when they first start to supplement with B12, but usually this is due to healing of the nerves and it should pass after a bit.

Yes, Lyme can cause inflammation of the stomach, thereby preventing the proper production of Intrinsic Factor.

Lyme also can dysrupt gastrointestinal motility, which can also interfere with Vitamin B12 absorption.

And Lyme can cause inflammation in the small intestine where the B12-Intrinsic Factor combination is absorbed, thus preventing absorption of oral B12.

There are different forms of B12, too. So if one form (the most common/least expensive is Cyano-cobolamin) doesn't seem to help, you may need to switch to a different form.

Compounding pharmacies can make the different forms in an injectable version if the cyano-B12 doesn't work.

Some rare individuals seem to react negatively to Cyano-B12.

This may be due to difficulty detoxing the Cyano- part of the B12 molecule. These individuals should use methyl-B12 or hydroxo-B12 instead.

Some doctors recommend supplementing with multiple different forms of B12, also...esp. those familiar with Methylation issues.

B12 does help to support methylation, which is a very important detox enzyme cycle often over-taxed in those of us with Lyme/co's.

Additionally, some have observed that Vitamin B12 supplementation can help decrease gastrointestinal inflammation.



Posts: 746 | From WA | Registered: Feb 2011 |




Member # 5412

posted 07-16-2011 01:34 AM

yes, lyme can cause parietal antibody upset. I have that and I can not absorb b-12 through food, or pills.

It caused neuropathy and neuro said it would have eventually killed me had I not got back on b-12 injections.

It starts with the peripheral nerve damage and moves closer and closer to the brain and eventually your nerves that the brain uses to tell you to breath are affected and you die.

I learned the hard way.

Only when another neuro doc did a ton of bloodwork did they find this very thing (parietal antibody) and he didn't even notice it in the many pages of results but when I took it to another doc, she found it and began the b-12 injections.

I had previously been on b-12 injections from my pcp who noticed I had low levels.

That was all she could ever find wrong with me. Then a GI doc told me to stop them, and the rest, you know..

Too many specialists, not enough common sense..

Posts: 71 | From TX | Registered: Mar 2004

© 1994-2011 The Lyme Disease Network of New Jersey, Inc.All Rights Reserved.


07/16/2011 08:29 AM

I had a B12 deficiency, not even a severe one, and it really DOES make a difference.

More so than any other supplement I take, except for my amino acids and proteins.

07/16/2011 10:23 AM
Posts: 397

Great article Betty

Dr Mercola had a great article a few years back on B12 Deficiency and Sleep problems , B12 is a percursor to Melatonin production

As we age we have a harder time absorbing B12, Maybe the reason so many older people have a hard time sleeping, Their B12 deficiency stops the normal production of Melatonin

Deficiency in any vital mineral or nutrient can cause Inbalance in our bodies, We know a lot of people with Lyme disease are deficient in Magnesium that can cause so many problems

I dont know how anyone can Heal without a very healthy diet, And proper nutrition, No Pill or medicine can compare to Eating healthy

I am a meat eater and I also take a high quality protein drink along with a Bcomplex, But when I take Any kind of B complex I get nuclear yellow urine, so how much of the vitamins in the bcomplex are really absorbing. epidemic-with-serious-consequences

Great Article Betty,

Have a great day John

07/16/2011 03:46 PM
ZsuzsannaPosts: 202

I'm getting a little apprehensive about a deficiency but I don't know where to start. After Bartonella came out last month for me, I have muscle spasm, aches n pain,

aspecially neuro pains where I can't sleep at all at night. Could that be pointing to anything or am I just simply herxing? Gosh how do we tell the difference between all

these symptoms? Should I as my doctor to do some blood work?

07/19/2011 02:30 PM

Zsuzsanna- Ask your doctor to do a full vitamin/mineral panel. It can give you a clear picture of what you need to work on, if anything. It might even help you alleviate some symptoms.

Selenium deficiencies, for one, seem to happen a lot in people with Lyme Disease. So yeah, it's worth checking out!

My mom had a severe iron deficiency, and it dragged her down for months until she started supplementing. And she's one healthy lady!

08/07/2013 10:47 PM
Posts: 32211
VIP Member
I'm an Advocate

Could a Common B-12 Deficiency Be Causing Your Symptoms?

By Dr. Dana Myatt, NMD, and Mark Ziemann, RN* • • February 17, 2010

B-12 DeficiencyLess than 20 years ago, patients complaining of fatigue were often given a "tonic shot" by their doctor. Many people claimed this worked like magic to improve their energy levels. What was this miracle tonic? A simple injection of vitamin B-12.

Although the practice of administering vitamin B-12 injections has fallen out of favor, modern medical science now understands why vitamin B-12 supplementation makes people feel better, and the reasons extend far beyond just the "placebo effect" of receiving a shot.

The Far-Reaching Effects of Vitamin B-12 Deficiency

Vitamin B-12, called "cobalamin" because it contains the mineral cobalt, is required for a staggering number of physical functions and chemical reactions.

Best known for its participation in the manufacture of red blood cells, B-12 is also needed for production and maintenance of the myelin sheath that surrounds nerves and for production of DNA, the genetic material of all cells. And that's just the beginning.

The serious health consequences of vitamin B-12 deficiency can adversely affect nearly every system in the body.


Even minor deficiencies of vitamin B-12 can cause anemia, fatigue, shortness of breath and weakness.

The Nervous System:

Deficiencies of B-12 can cause neurological changes including numbness and tingling in the hands and feet, balance problems, depression, confusion, poor memory and Alzheimer's-like symptoms. Long-term deficiencies of B-12 can result in permanent impairment of the nervous system.

The Gastro-Intestinal System:

B-12 deficiency can cause decreased appetite, constipation, diarrhea or alternating constipation/diarrhea, weight loss and abdominal pain.

The Immune System:

Vitamin B-12 is necessary for normal functioning of white blood cells.

Studies show that B-12 helps regulate Natural-Killer T-cells and prevents chromosome damage.

The Cardiovascular System:

Vitamin B-12 participates in the conversion of homocysteine to methionine.

Elevated homocysteine levels are a known independent risk factor for heart attack, stroke and thrombosis.

Without adequate B-12 levels, homocysteine levels typically rise.

Special Senses:

Degenerative changes in the central nervous system caused by B-12 deficiency can also affect the optic nerve, resulting in blue-yellow color blindness.

Other symptoms of vitamin B-12 deficiency include sore mouth or tongue.

With so many physical functions at risk, it is easy to understand why knowledgeable clinicians and researchers consider B-12 supplementation beneficial.

Are You At Risk for a Vitamin B-12 Deficiency?

Medical science once believed that few people were vitamin B-12 deficient. This false assumption may stem from the fact that vitamin B-12 is produced in the body by a normal, healthy population of bowel bacteria.

Secondly, unlike other water-soluble vitamins, B-12 is stored in the liver, kidneys and other tissues.

Deficiencies of B-12 often appear so slowly and subtly as to go unnoticed, and blood tests for vitamin B-12 levels miss early deficiency states at least 50% of the time.

So, who is at risk for vitamin B-12 deficiency? Recent research shows that a much larger segment of the population is likely deficient than previously thought.

Because assimilation of vitamin B-12 from food requires adequate stomach acid and intrinsic factor, and because stomach acid typically declines with age, people over 50 were once thought to be the biggest "at risk" population for B-12 deficiency.

Previous studies showed 3% to 39% of seniors to be vitamin B-12 deficient, but newer studies suggest that number may be as high as 72% to 78%.

Vegetarians and vegans are another population believed to be at high risk for B-12 deficiency, in part because of low animal food intake of vitamin B-12 and also because many vegetable sources such as seaweed must be consumed in large amounts in order to provide adequate vitamin B-12.

Other high-risk groups for B-12 deficiency include:

• Those who use acid-blocking or neutralizing drugs (such as Prilosec, Prevacid, Nexium and others), or drugs which impair intestinal absorption (such as Metformin, Questron and Chloromycetin),

• People who have had gastric surgery,

And people who have chronic illnesses such as ME/CFS and Fibromyalgia.

(For an explanation of two complex models suggesting a connection between vitamin B-12 deficiency and ME/CFS - The Nitric Oxide Cycle and the Methylation Cycle - see "Deficiency in ME/CFS and FM May Provide Clues & Relief"Wink

Bacterial overgrowth of the small intestine, which occurs frequently in people with low stomach acid, is a predisposing factor for B-12 deficiency because the bacteria themselves use vitamin B-12.

The most recent and disturbing studies suggest that vitamin B-12 deficiency is more prevalent in young adults than previously thought.

One study found that vitamin B-12 deficiency was similar in three age groups (26-49 years, 50-64 years, and 65 years and older), but that early symptoms were simply less apparent in the young.

This study also found that those who did not take a vitamin B-12 containing supplement were twice as likely to be deficient as supplement users, regardless of age.

Four Forms of B-12 - Which One is Best?

Cobalamin is a collective term for four closely related forms of B-12 - cyanocobalamin, methylcobalamin, hydroxycobalamin, and adenosylcobalamin (dibencozide).

Cyanocobalamin, the most common form of B-12 found in nutritional supplements, has the lowest biological activity and must be converted in the liver to methylcobalamin or adenosylcobalamin before it can be utilized.

Because it can be converted to other forms of B-12, cyanocobalamin can be considered the "mother form" of B-12. However, this conversion is inefficient and some people may not benefit from cyanocobalamin due to lack of assimilation or conversion.

Methylcobalamin is considered by many researchers to be the most active form of vitamin B-12. It protects the nervous system by regulating glutamate-induced neuronal damage (common in aging) and promoting nerve cell regeneration.

Methylcobalamin is the only form of vitamin B-12 that participates in regulating circadian rhythms (sleep/wake cycles). It has been shown to improve sleep quality and refreshment from sleep, as well as increasing feelings of well-being, concentration and alertness.

Adenosylcobalamin (dibencozide), the second highly active form of vitamin B-12, is essential for energy metabolism. It is required for normal myelin sheath formation and nucleoprotein synthesis. Deficiencies are associated with nerve and spinal cord degeneration.

Hydroxocobalamin is a unique form of B-12 that participates in detoxification, especially cyanide detoxification. Cyanide levels are often elevated in smokers, people who eat cyanide-containing food (like cassava) and those with certain metabolic defects.

Excess cyanide in the tissues blocks conversion of cyanocobalamin to methylcobalamin or adenosylcobalamin.

In such instances, hydroxocobalamin may be the vitamin B-12 of choice. Hydroxycobalamin is FDA-approved as a treatment for cyanide poisoning.

Oral Vs. Injectable: Which Delivery System is Preferred?

Although many people including some physicians still believe that injectable vitamin B-12 is the preferred route of administration, it is well-known and widely accepted that oral vitamin B-12 is equally as effective as injection in treating pernicious anemia and other B-12 deficient states.

Conclusions and Recommendations

• Vitamin B-12 deficiency is far more widespread than previously thought, with up to 30% of young people affected and possibly as many as 78% of the over 50 population suffering from deficiency.

• Those at special risk include:

- Seniors,

- Vegetarians and vegans,

- People taking acid-neutralizing drugs or various other drugs, and

- Patients with cognitive impairment and/or chronic illnesses.

• The U.S. Institute of Medicine recommends that adults over 50 obtain their vitamin B-12 from supplements.

• Because symptoms of vitamin B-12 deficiency often manifest months or years before B-12 blood tests become abnormal, early deficiencies are often missed.

• Symptoms and side effects of B-12 deficiency are many and varied, can mimic other diseases such as Chronic Fatigue Syndrome, and can produce irreversible changes of the nervous system if not corrected early.

• Oral vitamin B-12 supplementation is extremely safe, as effective as injections, comparatively inexpensive, and more convenient than injections.

• Those at risk of vitamin B-12 deficiency or with symptoms suggestive of B-12 deficiency should consider adding this important nutrient to their supplement protocol.


* Dr. Dana Myatt, NMD, is a practicing naturopathic family physician, educator, author, and speaker with a special interest in nutrition. She lectures widely to medical and lay audiences, and hosts a website (

Mark Ziemann, RN, Dr. Myatt's husband and collaborator, is also an educator, author, and speaker specializing in holistic nursing practice and patient education.

See also “B-12 Deficiency in ME/CFS and Fibromyalgia May Provide Clues & Relief,” another article by Myatt & Ziemann explaining the possible role of B-12 deficiency in chronic fatigue syndrome, fibromyalgia, and related illnesses.

Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat, or cure any condition, illness, or disease.

It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team. libid=14192&B1=EG080713&B3=EG080713&utm_source=EG080713& utm_medium=em&utm_campaign=Wellness& slvor=11214.1106371.

· Copyright © 2013 ProHealth, Inc.

08/08/2013 07:23 AM
Posts: 2353
Group Leader

It would be important to look into MTHFR also. A B12 test can be high because it is in the blood stream but NOT making it into the cells.

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