b12 questions
 

Hey everyone,
New here, and glad to see the board is up and running.

Here's my question:

Is it possible to have a b12 deficiency (my level was at 220) and NOT
have elevated homocysteine, elevated mma, be positive for intrinsic factor block or pareital (sp) cells?

I do NOT have any of those associated problems..........
I have been tentatively dx'ed with Combined Systems Disease.
and/or Multiple Sclerosis.

I have attacks of fatigue, spasticity, weakness, cognitive problems, speech issues, balance issues............scotomas, bladder issues.......

clear mri's, one positive LP for elevated protiens, no dtr in left foot, positive babinski right foot, positive rhombergs, and more......

I recieve weekly injections of b12 since the intial protocol in Feb did nothing.
Weekly shots began in May, with my blood serum b12 at 700 in July & Aug.

Any insight for me?
Thanks for listening!
take care
laura

Combined Systems Disease????
 

Hi Laura, sorry I cannot answer your question,however I do have a question for you-what the heck is Combined Systems Disease??

And I wanted to say that the only doctor (neuro) that ever ordered a B12 test on me had it flagged as too high @ 900. After reading alot of info on the old BT site I began taking B12 Methylcobamin. I had severe cognitive problems @ the time & myoclonus (full body jerks).

Possible MS was also something several docs told me. You might want to take a few minutes to research Lyme & MS (Lyme mimmicks many neuro disorders).

Are you also taking folic acid?

Hopefully someone will be able to answer some of your questions soon!

I also discontinued the use of Splenda & aspartame about the same time I began taking B vits, I rarely suffer severe myolonic attacks these days & have improved ALOT in the brain department.

Take care,Buttons

csd
 

Hi Buttons,
Subacute Combined Systems Disease aka: Subacute Combined Degeneration
is a demylenating disease that very much mimics ms.

It is a complication of chronic b12 deficiency. It causes the spinal cord to demlyenate in two locations corticospinal tract and pyrimidical tract.

but since I don't have those other elevated test results, and no anemia,
I wonder if I have a true b12 deficiency.

You feel that the shots of b12 are what has helped you?

I'm hardly getting any relief for my situation.

I was supposed to take b1, b6 folic acid, SAME & vit E but I got horrible alll day pains in my stomach, and couldn't figure which vitamin was causing it.
and was told to discontinue them. I do sometimes take them just because.

I never eat or drink those artificial sweetners (and it show! ha ha) I could never stand the after taste.

I've had several lyme tests including two spinal taps, one got sent to the lab in california that specialized in lyme, so I think that's been ruled out.
thanks for listening,
laura

Yes it is possible
 

Those tests together will generally show one or more positive/elevated, but they are not 100%! None of them is 100%.

That is why some docs who are better informed regarding B12 treat everyone with symptoms.

Also, there has been interesting evidence that even people with MS need B12 treatment.

rose

Stomach pain & vits
 

Laura, I've never had a B12 shot. I take the Methylcobalamin under my tongue, 1/2 hr after I take my folic acid,B1,B2 & B6.

I also get stomach pains but not sure what causes it,I'm nauseated (sp) 24/7 whether I'm taking any pills or not!

I have alot of nerve damage & extreme fatique, I swear by the B12. At one time I couldn't even recall how to push a button to turn on my computer! I truly believe I'd be dead now if not for all the supplements I take. I've given B12 to people suffering so bad from PN they could not walk. I give bottles of it as gifts to the alcoholics in my life!

Rose, you are one of my internet Angels,thanks again for all the time you spend educating people about B12!

Buttons

Thank you, dear Buttons. :)

rose

hi again
 

O Buttons,
I know that feeling! I was sitting in a car waiting with a coworker to visit a client. I had a pen in my hand and was trying to operate it. I pulled it, I pushed it, I spun it over and over to the point of exasperation.

When all of a sudden as if in slow motion this hand reached over very slowly, and then the index finger of my coworker very surely pushed the button at the top of the pen..........and viola.........I was so absorbed in trying to get this pen to work, I forgot anyone was with me.

That was a very low day.
I'm glad to hear that you are getting relief from you symptoms.

And thank you too Rose,
I appreciate your comments.

I guess this is a long road to healing? Some of the damage may be irreversible? Is this true?

Meeting tomorrow with PT for a "gait rite" test- whatever that is.
Wish the neuro and pt could have spent the day with me, staggering around the office, vertigo, weakness, pain, spasticity and so on.........
ugh.
thanks for listening.
laura

Progress and gait
 

I hope you will make much progress. There is no way to know; it is a very individual thing. Just don't let anyone convince you that it must happen quickly or not at all. Improvements can take place over several years.

I also know the feeling. There was a time during my healing (as my brain was about to make a great leap of improvement a few years down the road :eek: ) when I would shuffle two bills over and over with my checkbook trying write two checks and get everything in the correct envelope.


Gait is how you walk.

Best wishes to you too.

rose

I don't think that the SAMe fits in with all those others. B12 can raise your histamine levels. This relates to methylation and your homocysteine levels. The one that does not fit is the SAMe. Folic acid and b12 can raise histamine levels, but the SAMe would actually lower your histamine levels. So, that combo does not sound right to me.

Now, some people do have a problem with sulfur and can have problems with absorbing it through their GI tract. SAMe is a sulfur containing amino acid. The body gets rid of histamine through sulfation.

So, my guess is that it might be the SAMe that is causing the stomach aches. But that is the problem with taking several supplements at once, you can't tell what ones are working and what ones are causing a problem.

See, Buttons supplements include ALL but the SAMe. I don't understand why you were told to take SAMe.

Fatigue is the worst, I know. I would think that you may have some other deficiencies that you and your doctor are missing.

Hello, Lahgarden....
 

Can you tell us what doses you use for your supplements?

Do you use enteric coated SAMe? Enteric coated SAMe bypasses the
stomach... it doesn't dissolve until the intestines. (it is not stable in stomach
acid).

Except for the SAMe and B12, most other vitamins should be taken with food.
SAMe is best taken first thing in the morning at least one hour before food.

Sulfur is very plentiful in the diet, you would be eating far more sulfur containing amino acids daily than are in SAMe.. which BTW is a natural substance your body makes. (your body does not make, vitamins--they have to be taken separately.)

Mild gastric distress is sometimes reported by people beginning to take high dose SAMe, however, I have used it since 1999, and have never had an upset. Mild distress can be avoided with smaller doses in the beginning, and I think it has to do with the fillers in the tablets, not the SAMe itself.

Your neurological issues if B12 dependent can include neuropathies including the GI tract (gastroparesis). So you need to focus on getting that B12 level up. (When B12 is very low, it becomes low in the spinal cord as well).

thank you so much
 

Hi Mrs D,
Yes, I gathered the pills here, in addition to a weekly shot of 1000mcgs of b12
I was/am supposed to take:
Active B6 caps - 50mg
B1 - 100 mg
Folic Acid - 1 mg
Super comples Vitamin E 400 iu
and
SAM-e full potency 400 elemental- highest concentration 400mgs kept in fridge.

I always took the sam-e on an empty stomach, and the others through the day with food.
I had the feeling that a little explosion went off in my stomach, and it hurt for
about 40 seconds, then a minute would pass and the explosion would occur again over and over all day long.
I'm luckily not a stomach achey girl. I had my gall bladder removed long ago.
I have medullary sponge cysts both kidney and am a stone maker ugh.

I have a list of maybe nine different amino acids I am deficient in.
I googled them all, and each said it is very "rare" to be deficient in.
Is this another clue?
I am not vegetarian, I eat from all food groups. I didn't know neuropathies can occur in your digestive track. Interesting. thank you.

orthomolecular
thanks too, I thought the SAM-e helped to metabolize the b12 and make it available, or assisted in some way?

hi rose,
thanks to you too,
I have been sick for three years before this nuero picked up on the 220 b12 levels. He also knows my old neuro said "It's too early in the disease to do anything about it" and I was fed up with her. She had done an lp that showed my spinal fluid b12 was fine, (with the range all things being relative I suppose) but the protein was out of range and she told me my lp was NORMAL.

Any way, sick with nuero problems escalating and only started the b12 this very year.
goofy brained today, went to doc for gait rite test, it's actually on this friday.
more and more mistakes like that every day.

thank you all for listening,
I appreciate any clues you can give me.
laura

Who makes that SAMe? What company?
 

Properly packaged SAMe does not need to be kept in the fridge.
It should be blisterpacked to exclude moisture.

SAMe does not dissolve in the stomach. If you do not take it with enough
water, it could conceivably sit like a "pit" in your stomach and cause a local
reaction. This can happen from any dosage form for any drug that is not
properly swallowed with adequate water. At least 4oz, but preferably 6-8.

sam-e
 

hello,
the sam-e I got from the health food store,
cost $40 and is made by Jarrow Formulas
"Natural SAM-e full potency 400 elemental sam-e
hightest concentration of active S,S Form"
blister packed and sold out of the fridge where I keep it.

Is this good?
Or did I waste my moolah?

thanks,
laura

B12 dosage
 

lahgarden (hey,it's clever of you to not capitalize your name-easier to type!!)

Anyway, I'm wondering about the dosage of B12 you are getting. My little pink pills are 1 MG.

Maybe someone can explain what all the dosage letters mean?

Also, have you considered dropping the SAMe stuff & see if it helps your tummy?

Here's some more whacky brain incidents I've had: went an entire year thinking (insisting actually), that I was a year older than I was.

Would get in shower & wonder how to turn it on,also would forget to shampoo hair & have to get back in.

Gave my maiden name over the phone (which I hadn't used in over 34 years)

Used a combination of my parent's phone number & my own.

Wrote my own address down rather than the person I was mailing a letter to.

Did I think I had early dementia?? You bet ya! Since I'd been told possible Parkinson's I suppose I just figured I was odd enough to have BOTH mental & physical problems from it (my research had shown you either present with one or the other,seldom both).

Hope some of my brain quirks gave someone a chuckle:D The point is that B vits have saved my life!

Take care & don't despair! Buttons

thanks buttons
 

You made me laugh,
and not at your expense I assure you.

Just this afternoon I was surprised to learn I was a year younger than I thought!!!!

I'm surprised I'm still employed considering the idiotic mistakes I make all the time.

I have picked up a sort of dyslexia, I write numbers all wrong..........so when you route a truck to make a plant delivery, it can kinda get pretty ugly.

I mix up different genus' of plants.......I just shipped a boat load of the wrong plants last week, cause my dingy brain heard what it wanted.

I even speak entire sentences BACKWARDS. Even though they were small sentences, it is freaky...word for word.
Sometimes I slur my words so badly I bite big chunks out of my tongue.

I am constantly using the wrong word for things, and it's like an echo chamber cause people say them back to me........."moustache? do you mean magazine?"..........."hopscotch? do you mean horseback?"
it's so goofy.

I definately forget how to turn on the shower too!

Last week at work I was very diligently reloading my stapler with PAPER CLIPS.

Alzheimers got my paternal grandmother, and my mother's brother may have it too......it's a scary thing to contemplate. I wouldn't even go there if I were you......way too scary.........this b12/ms/mito business is scary enough!!

I get a shot of 1000mcg's a week of B12.
and thanks to all of you, I got out my vitamins and I'm getting back to task with them.

I'm trying like crazy not to despair.
some days I can cope just fine......
I'm grateful for the encouragement.
laura

Paper clips in the stapler! Too funny!
 

OK, here's some more brain fog goodies: I'm self employed & one year I figured I didn't owe a penny on my B&O taxes,so naturally I mailed it off at the last minute & then had to pay my taxes PLUS a fine! That really wasn't too funny cause I'm pretty much living on the edge as it is.

I gave up driving a couple years ago cause of the myoclonic jerks & seeing critters on the road that were not there-scary!

Went to the doctor on the wrong day. Have to write EVERYTHING down & check it twice!

Used to work retail besides my own business & had to pay sales tax out of my wages when I'd totally forget to charge for it.

Messed up my checkbook really bad.

Kept buying books I'd just read. Same with movies.

Word mixes-yes, I've done that also! Stumble over my words to the point where I'd refuse to even talk on the phone. I still find it much easier to type than write,sometimes my handwriting is teeny (another sign of Parkinson's).

Hopefully someone else can relate to some of this weird brain behavior & take a hard look at their nutrition/supplements.

At one time I doubted how to spell "the". I was always an excellent speller so this really alarmed me.

Later,Buttons

o me poor wee brain!
 

spelling the? that must have been a scary moment.

Seeing furry critters? Tell me more about that.

I see these black blind spots, sometime's white blind spots I have a few permanent white blind spots........by the time I see them and look again they disappear.

But lately I noticed, that I think I see things running by in my peripheral vision.........yes -furry critters perhaps, maybe small mice, or large spiders......

why are things so complicated?

My driving problems stem from not being able to see dark colored cars.....and I have pulled out in front of them more times lately than I care to reveal.

My job shifted from being out in the nursery with customers and checking plant status weekly for a hot list, and generally running around...........

but then my phyiscal problems got a bit worse, at the same time our bookkeeper pilphered our petty cash and got canned..........and so now I am doing the books and just inside sales and shipping............me doing bookkeeping.
I guess an honest half wit is preferrable......
yikes!!!


what vitamins do you take buttons?
what meds to you take for the myoclonic attacks?
take care,
laura

Phantom images
 

That's the name used to discribe seeing critters in peripheral vision. Two years ago I complained of this to a different eye doc-he said it's what people get from taking LSD (I left his office in tears of frustration!)

I don't take meds for the myoclonus, I was perscribed Klonopin by several docs but never took it, it's apparently addictive. I was on Zoloft @ the time the jerking began. Stopped that cold turkey cause I was suicidal. I started taking the B12 & other B's,magnesium & zinc, and most important I stopped consuming 5-6 diet sodas per day & drinking Atkin's shakes.

I take alot of stuff:

Cat's claw
Sarsaprilla
Multi-enzyme
Chorella
Q10
Grapeseed extract
Selenium
Garlic
B1,2,6,12 & folic acid

Only RX I take is for high blood pressure & I've recently cut that down by 2/3 by going on a low sodium diet. I've taken Soma for my back for many years but only use 1/2 dose & only when my sciatica is really bad.

If I could only have one pill per day, it would be the B12 Methylcobalamin,it's very cheap,about $8 for 60 tablets. Everytime I get slack on taking it my depression comes back,energy goes out the door & I notice brain function loss again.

My PCP actually told me years ago to stop taking B vits cause my B12 level was too high (900). That's how much they teach in med school about vits I suppose! At the time I was jerking so bad right in front of her that she was scared! And had to hang onto the walls to get to the exam room! She prescribed (or tried to-I said NO), Premarin,guess that's the answer for all middle aged women with "mystery" symptoms!:rolleyes:

Without the internet I'd never have figured out what's wrong with me!

Here's a list of symptoms I've had over the past 8 years:

Myoclonus
Migraines
Dizziness & vertigo
Creepy/crawly feeling in legs (felt like water running down my leg or bugs crawling)
Numbness in face,hands
Vision problems
Angina attacks (went to ER) scary!!
Heart mummur (sp)
Arthritis in knees,fingers,thumbs
Pelvic pain
Total loss of libido
Rashes
Red spots under breasts & on belly
Personality changes
Severe depression
Extreme fatique
Foot drop
Pain in bottom of feet/heels
Anxiety attacks
Rage attacks
Mental confusion/brain fog
Weight gain (30# & still going up)
Type 2 diabetes
Loss of emotional feelings
Edema

Probably even more I just don't recall right now.

As I've mentioned before-almost every one of these symptoms comes & goes! The angina attacks were @ 3am & I had them for 3 nights in a row (took nitro pills after the ER visit). Vertigo only lasted a few days. Rages came on for no reason & were out of context to anything going on @ the time.Have never had a weight problem in my life (I'm now 57). There have been times when I had to use a walker.

ALL of the above began after a spider bite ( I killed the spider-there's no doubt what bit me,woke me up in middle of night). I thought it was perhaps a brown recluse,the bite remained visable on my foot for over a year. If I'd been fortunate enough to get anti-biotics @ the time of the bite I might not have gone through 8 years of health decline. Before the bite I was very active,energy was always high,never had any brain "issues",had a normal sex life,was outgoing,friendly,had great sense of humor.....all that has gone. The worse part for me is to not "be me" anymore. The pain (which I forgot to list),hits anywhere @ anytime,arms,legs,neck,top of head,back,feet-it can feel like someone is sticking me with an ice pick,usually only lasts for seconds,it can literally bring me to my knees (another reason I don't drive).

I'm telling all this because it just might ring a bell with someone else. I've learned NOT to discuss my health issues with anyone because it all sounds too bizarre unless you have lived it also. There is no cure for Lyme when it's not treated promptly & aggressively. And for those who think I'm wacko because Lyme is ONLY from ticks.....ticks are in the same family as spiders,just smaller! It is now suspected that fleas,some flies,mosquitoes-basically any critter that bites can carry/infect with Lyme & several different co-infections. There are NO 100% accurate tests. A negative test means nothing,it's diagnosed by symptoms. Some research indicates it's passed sexually,through breast milk, and the placenta.

Sorry, this is not the Lyme forum but I feel it's my duty to educate people about this horrendous disease-it might save a life!

wow, that is awful buttons
 

too bad the eye doc didn't wear his human persona that day.
There's nothing quite like being dismissed by a doc, is there?

You're PCP didn't seem to be of much help either huh? shame. What is with people?

Mine is convinced I have ms and said, he'd stake his "entire career on it."


You take a lot of things I never even heard of.
I'm gonna have to google them to learn more.

I have some of the same symptoms, what I call the hatpin stick you call the ice pick stick......probably because my hat pin sticks only causes my limb or body to jerk but doesn't bring me to my knees with any sort of quantative pain......gosh that must be awful for you.

The only neuro pysche sx I can say I may have had (other than a raging dose of PMS) was a brief bout of suspicion.........for a time there, every time some one talked to me I thought "they do NOT know what they are talking about!!!"

and when it went beyond my DM, DH and Dear Boss --who mostly DON'T know what they're talking about anyway--; I said Gee and I started to wonder if it was ME, especially in light of the goofy brained -ness. And then it passed........so maybe it was me!

It is good that you share, because you are absolutely right, how else will others benefit from what you've gone through?

Recluse spider bite is supposed to leave a visible lesion? Right?

I've never heard that other rascals can carry lyme's but it certainly would make sense.

Have you considered West Nile? Are there even neuro sx's for it?

When you are feeling that awful it is hard to separate the illness from yourself. I'm sorry you feel so lost sometimes. I am sending {{{hugs}}}}
and I'll keep you in prayer.

hang in there.
laura