[deb54]

Hi, new to posting, but at my wit's end. I am severely b12 deficient and can't seem to tolerate the side effects of treatment. I've had several small bowel surgeries, am very reactive, any change in my diet or treatment plan for my immune disorders are always a disaster. For example: tooth blew apart during an MRI. EMG resulted in extreme lymph node swelling, dosing methylcobalamin resulted in higher BP, rapid heart rate, chronic cough and finally..one breast became swollen as well as the lymph nodes. I'm 57, have psoriasis and psoriatic arthritis, multiple food and chemical allergies/sensitivies. After my last bowel resection, these allergies seemed to go away...until starting the b12 sublinqual.

I started on 1000mcg of Pure Encapsulations methylcobalamin. Results were immediate, eyesight cleared, 4 yrs of neck pain, gone...I could move. My memory began to clear and I was nolonger apathetic. With the exception of depression, I had every symptom on any list. I was never tested until I noticed not eating GrapeNuts made me feel worse than ever. I brought this to my nurse prac's attention...tested my b12, which was 200. Started on suppliments without the other tests. Nurse prac didn't know about them or the importance of these tests. We assume I don't absorb much. I've lived most of my life w/out any source other than GrapeNuts cerial.

Other adverse reactions: extreme depression of which I'd never had before, burning urination, swollen hands, legs, (not an illusion, I measured. I only wiegh 100 lbs, easy to tell.) nightmares, panic attacks, weight gain, fibroid formation. psoriasis worsened, chest pain, breathing problems.

Positive reactions, memory returning, neck pain gone, I can move again, strength returned.

Questions for any of you on this board..and thank you for reading this far...

Has anyone had severe, odd reactions to b12 suppliments? What were they and how did you solve the problem? Have you ever heard of anyone with these sort of problems? What kind of physician should I see next? I've seen my rheum, 2 internists, nurse pracs, nuerologist, and allergist. I haven't seen my nurtritionist, nor have I seen a gastro. Injections are not an option, pure methylcobalamin without preservatives or additives results in swelling of tongue throat amd mouth.

This is serious, I have to have the stuff, can't take an anti-allergen, not even epi...currently dosing 25mcg twice daily for 3 days, then 1 dose 25mcg, then skip a day. The skipped day is misery. any ideas???

deb...

[Nervous]

deb,

Sorry to hear about your trouble.

I am not an expert. More knowledgeable forum members will undoubtedly respond soon. But my individual experience is of no adverse reactions to B12, and I take ten times more than you. Also, I can't recall anyone on this forum who has noted adverse reactions to B12.

Good luck.


Note: Not a single healthcare person has ever suggested a B12 test on me, even though it was clearly indicated. Not even after my PN diagnosis. Go figure.

[karsten]

A test result of 200 pg/ml is very low.

I have read of people on other B12 forums who reported having periods of intesified symptoms after starting up B12 dosing. These symptoms could also be different than those typically experienced by that given individual. Some also have reported that these odd symptoms diminish over time as the body gets a daily dose of B12 over weeks,months and even years.

My experience with B12 was never that dramatic. I certainly felt its effect initially when taking it. Probably for 2-3 months. This "feeling" diminished over time. My last B12 test maxed out at over 1600 which was the test's upper limit. I still take B12 everyday and will for life. I think that despite of not feeling its effect anymore that it is still feeding my body and hopefully healing some of the damage done to my nerves. I think that I'm slowly getting better and that gives me hope.

Everyone is uniquely different when it comes to their experiences of peripheral neuropathy.

Good luck.

[mrsD]

Originally Posted by deb54

Hi, new to posting, but at my wit's end. I am severely b12 deficient and can't seem to tolerate the side effects of treatment. I've had several small bowel surgeries, am very reactive, any change in my diet or treatment plan for my immune disorders are always a disaster. For example: tooth blew apart during an MRI. EMG resulted in extreme lymph node swelling, dosing methylcobalamin resulted in higher BP, rapid heart rate, chronic cough and finally..one breast became swollen as well as the lymph nodes. I'm 57, have psoriasis and psoriatic arthritis, multiple food and chemical allergies/sensitivies. After my last bowel resection, these allergies seemed to go away...until starting the b12 sublinqual.

I started on 1000mcg of Pure Encapsulations methylcobalamin. Results were immediate, eyesight cleared, 4 yrs of neck pain, gone...I could move. My memory began to clear and I was nolonger apathetic. With the exception of depression, I had every symptom on any list. I was never tested until I noticed not eating GrapeNuts made me feel worse than ever. I brought this to my nurse prac's attention...tested my b12, which was 200. Started on suppliments without the other tests. Nurse prac didn't know about them or the importance of these tests. We assume I don't absorb much. I've lived most of my life w/out any source other than GrapeNuts cerial.

Other adverse reactions: extreme depression of which I'd never had before, burning urination, swollen hands, legs, (not an illusion, I measured. I only wiegh 100 lbs, easy to tell.) nightmares, panic attacks, weight gain, fibroid formation. psoriasis worsened, chest pain, breathing problems.

Positive reactions, memory returning, neck pain gone, I can move again, strength returned.

Questions for any of you on this board..and thank you for reading this far...

Has anyone had severe, odd reactions to b12 suppliments? What were they and how did you solve the problem? Have you ever heard of anyone with these sort of problems? What kind of physician should I see next? I've seen my rheum, 2 internists, nurse pracs, nuerologist, and allergist. I haven't seen my nurtritionist, nor have I seen a gastro. Injections are not an option, pure methylcobalamin without preservatives or additives results in swelling of tongue throat amd mouth.

This is serious, I have to have the stuff, can't take an anti-allergen, not even epi...currently dosing 25mcg twice daily for 3 days, then 1 dose 25mcg, then skip a day. The skipped day is misery. any ideas???

deb...

Here is a paper discussing mercury toxicity in relation to use of methylcobalamin...
http://www.whale.to/w/b12.html

I looked up GrapeNuts cereal. It is fortified with vitamins and has 25% RDA for B12 -- that would be around 1 microgram.

Have you had testing done after using the methylB12? Do you know the numbers?

I am sorry I don't understand what this means:

This is serious, I have to have the stuff, can't take an anti-allergen, not even epi...currently dosing 25mcg twice daily for 3 days, then 1 dose 25mcg, then skip a day. The skipped day is misery. any ideas???

..
Does this apply to oral dosing or injection?
If oral 25mcg is not very much. Average absorption of 1% or so, in the intestine, which you do not have much surface area left.
So knowing your B12 NOW level may be helpful for you to figure things out.

As far as your other symptoms... it could be diet related. Low consumption of essential omega-3 fats, leads to all sorts of problems. Do you eat meat, seafood, etc? Do you take other vitamins/minerals? Do you eat whole foods, to get adequate potassium and magnesium? Do you know your Vit D level?
There are alot of things you need to look at I think.

If you get your water from a well, I'd get that tested. Some wells can deliver heavy metals, like arsenic commonly.

There is a B12 patch. But I don't know if it really works. You can Google that and find one there. Also another possibility is having the methylB12 compounded into a transdermal gel. I don't know how much would be absorbed, but using this way could possibly work.

I don't know much about multiple chemical sensitivities, so I think you'd have to consult a doctor who specializes in this.
Perhaps an environmental physician?

Drugs can also cause lots of side effects... what drugs are you using?

[deb54]

Originally Posted by mrsD

Here is a paper discussing mercury toxicity in relation to use of methylcobalamin...

I looked up GrapeNuts cereal. It is fortified with vitamins and has 25% RDA for B12 -- that would be around 1 microgram.

Have you had testing done after using the methylB12? Do you know the numbers?

I am sorry I don't understand what this means:
..
Does this apply to oral dosing or injection?
If oral 25mcg is not very much. Average absorption of 1% or so, in the intestine, which you do not have much surface area left.
So knowing your B12 NOW level may be helpful for you to figure things out.

As far as your other symptoms... it could be diet related. Low consumption of essential omega-3 fats, leads to all sorts of problems. Do you eat meat, seafood, etc? Do you take other vitamins/minerals? Do you eat whole foods, to get adequate potassium and magnesium? Do you know your Vit D level?
There are alot of things you need to look at I think.

If you get your water from a well, I'd get that tested. Some wells can deliver heavy metals, like arsenic commonly.

There is a B12 patch. But I don't know if it really works. You can Google that and find one there. Also another possibility is having the methylB12 compounded into a transdermal gel. I don't know how much would be absorbed, but using this way could possibly work.

I don't know much about multiple chemical sensitivities, so I think you'd have to consult a doctor who specializes in this.
Perhaps an environmental physician?

Drugs can also cause lots of side effects... what drugs are you using?

My last b12 level 2 months ago was 483. I took an average of500mcg for 6weeks, after that oly 60mcg. Treatment was stopped for 3 weeks then resumed at 25-50mcg per day. I will be tested again in a month.

Diet: no fish, milk products, eggs, no preservatives, no prepared foods...I eat organic chicken and turkey, bison, all vegies fruits and...dark chocolate..a lot. It has been my hormone regulator for 30 yrs. I lose 10 lbs ina month w/out it. I eat 5x perday. low carb, as in I keep track of my glucose levels. Minimun gluten, although I am not sensitive...daughter is. Everything revolves around keepin my intestines from becoming blocked. One of my biggest conserns has been my 1 can perday of no salt turnip greens...currently cutting back to see if high vit a is causing an imbalance.

All bloodwork potassium, mag, cal...all but the anemia #s look good. They are dropping. Vit d is low at 42 2 months ago... always has been I use a narrow band uvb lamp 3x weekly for psoriasis and the vit d it gives me.

No drugs, meds, vitamins, ever.

These are from my rheum, neuro and internist...all of which want me on 1000mcg of methylcobalamin sublingual per day. Injections, no control over how much...patches..glue allergy..allergic to all lotions, gels, creams.

All docs are reluntant to start me on another suppliment due to my odd "reactiveness".

Interesting on the Grapenuts, never looked at the numbers per serving. I ate 4-5 servings per day..always. That would have given me adequate b12. Okay so why do I not start eating the cerial again..well, tried it for a few weeks and it resulted in the severe side effects that the sublingual was gieing me.

Could I simply have enough b12 for my body with tiny margine of error causing so much problems? This is what my docs think. Without a small dose of the b12 daily, though, my neck pain sits at level 10 and I am unable to move, bend over, lift my purse...really. I stumble. Neurologically, I am on the mend at even such a small amt...I am so very lucky. Where would we be without our minds?

Since stating this treatment, I have been craving vit c foods...?? an attempt to flush extra b12?
Too much of another vit..cause a big mess? If so, how do I go about finding out which one or how many?
I am allergic to metals and had to have much of the amalgum removed from my teeth.



Thank you so much for responding, all of you. I appreciate it so much. I will do more exploring on foods that I overconsume to keep my weight up. I'm doing something wrong, I feel it...just not sure what. Oh, tried cutting out the chocolate..side effects remained the same..something else.

You all enjoy your evening....
deb...

[MelodyL]

Originally Posted by deb54

Hi, new to posting, but at my wit's end. I am severely b12 deficient and can't seem to tolerate the side effects of treatment. I've had several small bowel surgeries, am very reactive, any change in my diet or treatment plan for my immune disorders are always a disaster. For example: tooth blew apart during an MRI. EMG resulted in extreme lymph node swelling, dosing methylcobalamin resulted in higher BP, rapid heart rate, chronic cough and finally..one breast became swollen as well as the lymph nodes. I'm 57, have psoriasis and psoriatic arthritis, multiple food and chemical allergies/sensitivies. After my last bowel resection, these allergies seemed to go away...until starting the b12 sublinqual.

I started on 1000mcg of Pure Encapsulations methylcobalamin. Results were immediate, eyesight cleared, 4 yrs of neck pain, gone...I could move. My memory began to clear and I was nolonger apathetic. With the exception of depression, I had every symptom on any list. I was never tested until I noticed not eating GrapeNuts made me feel worse than ever. I brought this to my nurse prac's attention...tested my b12, which was 200. Started on suppliments without the other tests. Nurse prac didn't know about them or the importance of these tests. We assume I don't absorb much. I've lived most of my life w/out any source other than GrapeNuts cerial.

Other adverse reactions: extreme depression of which I'd never had before, burning urination, swollen hands, legs, (not an illusion, I measured. I only wiegh 100 lbs, easy to tell.) nightmares, panic attacks, weight gain, fibroid formation. psoriasis worsened, chest pain, breathing problems.

Positive reactions, memory returning, neck pain gone, I can move again, strength returned.

Questions for any of you on this board..and thank you for reading this far...

Has anyone had severe, odd reactions to b12 suppliments? What were they and how did you solve the problem? Have you ever heard of anyone with these sort of problems? What kind of physician should I see next? I've seen my rheum, 2 internists, nurse pracs, nuerologist, and allergist. I haven't seen my nurtritionist, nor have I seen a gastro. Injections are not an option, pure methylcobalamin without preservatives or additives results in swelling of tongue throat amd mouth.

This is serious, I have to have the stuff, can't take an anti-allergen, not even epi...currently dosing 25mcg twice daily for 3 days, then 1 dose 25mcg, then skip a day. The skipped day is misery. any ideas???

deb...

HI.

I do not understand the following:

"For example: tooth blew apart during an MRI."

I'm trying to imagine what would make your tooth blow up??????

Thanks,
Melody

[deb54]

Originally Posted by MelodyL

HI.

I do not understand the following:

"For example: tooth blew apart during an MRI."

I'm trying to imagine what would make your tooth blow up??????

Thanks,
Melody

Hi, Melody... For some reason, magnets affect me in a crazy way. I had a filling on a top and bottom molar, the magnets of the MRI polarized them and caused them to get extremely hot. After 5 minutes, my mouth was pried open due to the poloarization, then the bottom one sort of exploded while the upper, cracked. I went to a specialist to have the amalgum carefully removed and the teeth repaired with ceramic. This dentist confirmed that he has read case reports of this, but that is has rarely happened.

I mentioned this to show I do react to most things differently than expected as well as to tip off anyone who had insight on mercury poisoning and b12. I could have been poisoned during this episode or during the wait while these teeth were repaired. The gum around the teeth became inflamed and painful.

It was a crazy situation and one for the record books. Give me something simple (like laying in an MRI machine) and I'll mess it up every time...lol...

deb...

[MelodyL]

HI.

I wanted to make a joke and say "You have a magnetic personality"

But then, what you experienced is NOT funny one bit. You poor thing.

I thought I was the only one that had some kind of dental reaction while I was put in an MRI. They were doing some kind of scan of my neck (long long time ago, so not sure).

But I will never forget what happened when they tried to slide me into the machine. This was NOT my first time in an MRI. Years before I had a lower back MRI done to confirm that I had degenerative joint disease.

So on this particular occasion, they slid me in and I felt my front tooth hurt (I have two front crowns). I started yelling "get me out of this, it's pulling my tooth"

They slide me out and and the tech guy said "That's impossible". I said 'oh, maybe it's me, I"m nervous, let's try again". Well, it happened again, I started screaming and they pulled me out and we did a Cat Scan instead.

I've never done another MRI.

My god, the stuff that happens.

Anyway, I'm glad you are still alive after all you went through.

Melody

[deb54]

Originally Posted by MelodyL

HI.

I wanted to make a joke and say "You have a magnetic personality"

But then, what you experienced is NOT funny one bit. You poor thing.

I thought I was the only one that had some kind of dental reaction while I was put in an MRI. They were doing some kind of scan of my neck (long long time ago, so not sure).

But I will never forget what happened when they tried to slide me into the machine. This was NOT my first time in an MRI. Years before I had a lower back MRI done to confirm that I had degenerative joint disease.

So on this particular occasion, they slid me in and I felt my front tooth hurt (I have two front crowns). I started yelling "get me out of this, it's pulling my tooth"

They slide me out and and the tech guy said "That's impossible". I said 'oh, maybe it's me, I"m nervous, let's try again". Well, it happened again, I started screaming and they pulled me out and we did a Cat Scan instead.

I've never done another MRI.

My god, the stuff that happens.

Anyway, I'm glad you are still alive after all you went through.

Melody

Melody, This is remarkable!! You also have a magnetic personality..lol...No, not funny, but I tell it occationally to get a laugh. I checked with an orthodontist and 2 dental surgeons to check on the cometic dentist's first statement pertaining to magnetizing fillings. All confirmed. You were wise to have a CT instead. This experience caused me to have 28 dental appts...

I've had many MRIs since, none of which caused too much trouble, some heating up of the few tiny spots of metal left, but no explosions. I've been an artist all of my life with much paint, cobalt, lead exposure...could be another clue to my diffficulties.

Good to meet you. Do you have any other oddities with foods, meds, hearing?
I've pretty much stumped most docs for 35 yrs, all documented. The b12 deficiency answered some of the problems during the last 4 yrs.

deb...

[NeuroLogic]

Reading some reviews on iherb to figure out the best therapeutic dosage, I saw this:

I put a diabetic cat on B-12 10mg once a day for her neuropathy that the Vet said would never go away. Within months her neuropathy was gone and she was able to walk normally again. This was 5 years ago and she hasn't had to take B-12 in 4 years and none of the symptoms have returned. (iherb review)

What's the maximum safe dosage per day for B12 deficiency in humans?