B-12

[Guest guest]

Jodi,

You are a joy!! I really enjoying reading what you are up to. And usually

it gives me a chuckle or two. Watch out for overdosing on the supplements

though. I've done that too.

Judi

B-12

From: CJCIMAGE@... (JODI CARLSON)

Is b-12 good for sleep? I can't remember now who was commenting about

it being good for energy, so sorry I did not respond with your name. I

always had heard that, too, it was good for energy.

Anyway, the reason I tried it the way I did was, here's a quote from

Cheney that was printed in July/August 1998 CFIDS Chronicle that a

friend sent to me:

" megadoses of b-12. Next on the pyramid are vitamins b-6 and b-12. The

latter is a potent detoxifier of the brain, Dr. Cheney said. The most

recent experience with B-12 in England suggests that it needs to be

given in megadoses in the range of 10,000mcg or more per day, given

before bedtime, to be effective, he said. The British version of B-12 is

hydroxycobalamin and is superior to cyanocobalamin as a brain

detoxifier. "

Now I don't know if his info came from some study over there or what,

but, boy, let me tell you, I had a really bad day today, after a bad

last night. I have been really messing around with the supplements,

trying to understand and change some things I was taking. I had been

doing the injectible B-12 at 2,000mcg 3 x week. for about 2 weeks now. I

also take a twin lab daily vitamin and mineral cap without iron, a twin

lab b-vitamin daily, digestive enzyme cap because I showed a lipase

deficiency on a test about 8 months ago, 1 gram ester-C daily, 30 mcg

Co-Q 10 daily. I recently added (2 days ago) one tablespoon of a liquid

calcium/magnesium citrate with a 2:1 ratio of magnesium/ calcium as

suggested in Earl Mindel's vitamin book to avoid throwing that balance

out of whack. These are not mega-doses of anything by any standard.

It's not like I am taking 10 grams of C or swallowing a whole bottle of

this liquid stuff.

But last night I did my 2,000 mcg of B-12 before bed, and after about

one hour, felt like my cells were cramping up. Don't know how else to

describe it. Not pain, but some kind of weird cramping, like maybe when

you have exercised too much and lactate builds up in your muscles. I did

not sleep well, and today this icky feeling continued most of the day.

I did not take any supplements today, and after I ate lunch, I felt even

more crampy and icky all over. It wasn't like stomach cramps or diarrhea

or anything, more in the muscles, and really set off fibro pain and

caused a lot of back spasms. I did not take any pain med, because I was

trying to see how this felt and if it went away after I ate, or drank

several glasses of water to try and flush stuff out. I am not sure if

the B-12 did it, the liquid calcium/magnesium, or combo with everything

else. But my body is not able to use all this good stuff somehow. There

is a kink going on somewhere. It feels like something really wants to

happen, but can't. So I don't know where the problem is, but that is why

I am getting really interested in this nutritional test. Maybe I am

leaving something out, or some ratio is really whacked out over time.

Anyway, time to back off (again) and go back to the theoretical drawing

board. I don't think I am going to be making it to 10,000mcg of

anything, so my brain will just have to remain toxified! (Smile)

Anyway, IF I keep up on the B-12, I think I will back off to 1,000mcg

2/3 times/ week, and take it in the morning. Always a big danger there,

though, trying to do things in the morning. Will probably stab myself

in a strategic place. But it is better than getting caught at work

shooting up with syringes in the restroom. Now that would be a hard one

to explain. SURE IT'S B-12!!!!! RIGHT!!!!!! We should do a sit-com

about this illness, no kidding!

Jodi

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[Guest guest]

> But last night I did my 2,000 mcg of B-12 before bed, and after about

> one hour, felt like my cells were cramping up. Don't know how else to

> describe it.

Do you take cyanocobalamin or hydroxycobalamin? I'm starting to have

doubts about cyanocobalamin. I read somewhere (I think in the PDR) that

cyanocobalamin at certain doses can release free cyanide (CYANO-cobalamin).

I give myself 1cc 1x/week. I think that any dose above 1cc can release

free cyanide. I started wondering if smaller doses could. When I

talked to my *good* doc wed he was apalled that my other doc put me

on cyanocobalamin and said he's switch my script right away to the

hydroxy form. So perhaps you body was getting benefit from the

b-12, but having to fight the cyanide at the same time?

Patti

--

[Guest guest]

In a message dated 4/9/99 2:41:54 AM Eastern Daylight Time,

CJCIMAGE@... writes:

> B-12 in England suggests that it needs to be

> given in megadoses in the range of 10,000mcg or more per day, given

> before bedtime, to be effective, he said. The British version of B-12 is

> hydroxycobalamin and is superior to cyanocobalamin as a brain

> detoxifier. "

Hello Jodi, I know Dr Cheney also changes individual dosages for his

patients,

Back to needing a Dr. to read our symtoms and levels of what we may need.

[Guest guest]

Hi ,

I take b-12 shots. The doctor prescribed them after I'd had some blood work

done. I don't remember him saying what the levels were then. He wanted me

to take them every 4 weeks. After 4 months I asked him about getting them

every two weeks. Since my insurance won't pay for them and I pay for them I

figured if I needed them and was willing to pay - why not! He agreed. Of

course I don't think he thinks about my treatment at all until I show up

sick or just want to ask him questions. I've suggested all that we are

doing now and from him that's not saying much. I'm the one who does the

reading on this and trying to figure what would work. I also have a friend

who is a nurse and who has CFS/FMS. She is the one who encouraged me to

talk to the doctor about my symptoms and get him to run test to find out

what was causing the fatigue. Up till that time whenever I came in with

another infection of some sort and wasn't getting better, he didn't seem too

concerned and I'm not sure he is concerned now.. In fact, he told me that I

should just keep pushing to do things even when I didn't feel like I had the

energy to go on. I learned real quick that that was a lie. When I do that

I really am sick and usually in bed. I plan on telling him that on Monday

when I go in to see him.

Wow you can tell I have felt better for the last couple of days. I'm too

wordy!!! Sorry guys.

Judi

B-12

>From: " Mann " <jmann@...>

>

>I just had a checkup today and was told that my b12 level is normal (went

in

>a week ago to have blood drawn). When I first got ill my doctor prescribed

>b-12 injections once a week and I felt they helped me but only for about 4

>hours right after the shot. When I switched insurance I asked my new

doctor

>for b12 and she said no. I begged her and she gave me 1 shot a month then

>refused to renew the prescription till I had a blood test done. After the

>blood test results she won't give me any more. Has anyone else had a blood

>test to show their b-12 levels?

>

>

>

>

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>This list is intended for patients to share personal experiences with each

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>

[Guest guest]

Yes my b12 test come back normal but I get some marginal benefit form b12

shots. You might find that you get a similar benefit from take b12 SL.

LOL

Steve

> B-12

>

> From: " Mann " <jmann@...>

>

> I just had a checkup today and was told that my b12 level is normal (went

> in

> a week ago to have blood drawn). When I first got ill my doctor

> prescribed

> b-12 injections once a week and I felt they helped me but only for about 4

> hours right after the shot. When I switched insurance I asked my new

> doctor

> for b12 and she said no. I begged her and she gave me 1 shot a month then

> refused to renew the prescription till I had a blood test done. After the

> blood test results she won't give me any more. Has anyone else had a

> blood

> test to show their b-12 levels?

>

>

>

>

> ------------------------------------------------------------------------

> Show mom you love her. Check out our great Mother's Day Gifts!

> 14K Gold and gemstone jewelry, leather and cloth wallets and purses,

> gardening, gourmet, kitchen, more! Free Shipping in the US!

> /ad/shoptheglobe5

> ------------------------------------------------------------------------

> This list is intended for patients to share personal experiences with each

> other, not to give medical advice. If you are interested in any treatment

> discussed here, please consult your doctor.

[Guest guest]

, you asked about B12 just as I was beginning to write an aricle on that

for the summer edition of The National Forum. According to Dr. Cheny,

the B12 is a compartmentalized difficiency so not all parts of the body will

test low. That, of course, makes it much more difficult to prove a need for

it.

Gail

[Guest guest]

Steve, make sure your doctors know how to write a letter for disability.

It's something they never learned in med school and they should know that

permanent for disability purposes means just one year. Our guidebook to

disability has some sample letters. Have you seen it? Physical finding are

most important to put into these letters.

Gail

[Guest guest]

[, T.] disability

I am in the process of applying for private disability through my employer.

I do not expect any problems but I would like to avoid potential problem and

also gather information is a way that is consistent with the social security

disability procedures. I have four Drs. that have worked with me closely

over the past year or so. I believe that they all agree that I suffer from

debilitating fatigue that is best diagnosed as chronic fatigue syndrome. My

plan is to have each of these Drs. send me a " To Whom It May Concern

Letter " . I will then go over these letters with my lawyer to make sure that

they provide consistent information. I can then either submit the entire

letter, ask for some of the letters be rewritten, and/or not include letters

that do not increase my chances of getting disability. Does this sound like

and effect " first step " ? Also please offer any suggestion you may have in

the following areas.

What term should I request the Drs. use in referring to physical

aspect of fatigue?

My job is primarily cognitive (Prof. In the social sciences)

and I am concerned about the terms that should be used in referring to the

cognitive disability associated with CFS. Should the focus be on

concentration on overall cognitive functioning? What are the terms that I

should use in referring to the mental side of this problem?

Are their any other special issues to keep in mind?

Thanks to those of you who have been down this road before. I will

appreciate your help in dealing with this thorny issue.

Steve

[Guest guest]

is the guide book the web

thanks

Steve

> Re: B-12

>

> From: GAILRONDA@...

>

> Steve, make sure your doctors know how to write a letter for disability.

> It's something they never learned in med school and they should know that

> permanent for disability purposes means just one year. Our guidebook to

> disability has some sample letters. Have you seen it? Physical finding

> are

> most important to put into these letters.

> Gail

>

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> Week!

> ------------------------------------------------------------------------

> This list is intended for patients to share personal experiences with each

> other, not to give medical advice. If you are interested in any treatment

> discussed here, please consult your doctor.

[Guest guest]

I just had my B12 tested by blood after I told my dr. it helped me sleep.

She actually laughed at me when she read it as being normal. I understand

that a spinal tap should be done because it can be in your blood but not in

your cells. I am going to go to another dr here after my daughter goes ( I

can't afford for us to both go at the same time since our insurance doesn't

cover him, we are both sick) and see what he thinks. He is supposed to be

very good with people that have CFS & Fibromyalgia.

Dianne

[Guest guest]

Dear Christa and all,

Thanks for the info on the pharmacy. I think that their price sounds pretty

competitive. I was just wondering if you had heard anything about the

various types B-12. Cheney highly recommends the hydroxycobalamin -- saying

that when the molecules break apart (as they are supposed to in order to do

their " job " ) you end up with water as a byproduct instead of cyanide. I take

1/2 cc of 10,000 units hydroxy in the am and 1 cc of it at bedtime. (BTW, 1

cc = 1 ml)

Just my nickels worth.

Beth

[Guest guest]

At 11:10 PM 07/19/1999 -0400, you wrote:

>From: Tom Craig <TCraig1@...>

1 vial ( 30ml ) of 5,000 Cyanocobalamin . The total cost , including

>shipping, was $38.

===

greetings, from cheney tape i remember he mentioned using

hydroxycobalamin or methylcobalamin, NOT cyanocobalamin

since the cobalamin is attached to cyanide. when you are

trying to detox the brain the cobalamin couples with

molecules leaving the cyanide behind, if i remember right.

nancy mcfadden

[Guest guest]

Hi Mike! It is more expensive (hydroxy), but because b12 is cheap to start,

it doesn't end up being that much (at least for sublingual). I paid around,

I believe, 12 dollars U.S. for a bottle of hydroxycobalamin. One drop has

like 833% of the R.D.A., so I think I must have at minimum several months

worth. I got it at SmartBasic, www.smartbasic.com. they are in San

Francisco. No affiliation with them, blah, blah , blah!

[Guest guest]

Hi,

My insurance co-pay just happens to be either $4 or $8 depending on whether

it is generic or not(used to be .50!!). Yes, mine is cyanocobalamin. What

is difference between this and hydroxycobalimin?

Christie

> Christie, This has to be cyanocobalamin. 30 ml costs me $1.50 with

>insurance

>copay. Hydroxycobalimin is at least 12 times more expensive. After the

>recent

>article in the CFIDS Chronicle touting cyano, I am confused as to which to

>use.

>Bell (or was it Lapp) says cyano and Cheney says hydroxy. Has anyone ever

>tried

>one and switched and noticed any difference.

>

>Mike

[Guest guest]

Hydroxycobalimin is at least 12 times more expensive. After the

recent article in the CFIDS Chronicle touting cyano, I am confused

as to which to use. Bell (or was it Lapp) says cyano and Cheney

says hydroxy. Has anyone ever tried one and switched and noticed

any difference. Mike

====

i trust cheney more than I do LAPP on this one. after all,

cyanide is a poison, perhaps not at levels in this for most

of us, BUT we are known to not detox properly often in cfs.

also, i think that methylcobalamin also works, there are several

pieces in PUBMED on how it improves cytotoxic tcells (cd8)

and natural killer cell function... and you don't need a

methyl donor for this to work, as it is already activated

with methyl. i must admit, i take this SUBLINGUALLY,

because the research says this works also.

nancy mcfadden

[Guest guest]

> Hydroxycobalimin is at least 12 times more expensive. After the

> recent article in the CFIDS Chronicle touting cyano, I am confused

> as to which to use. Bell (or was it Lapp) says cyano and Cheney

> says hydroxy. Has anyone ever tried one and switched and noticed

> any difference. Mike

I've tried both, and they both had the same effect (or that's the

way it seemed to me). Cyanide is released from the cyanocobalamin

and so I would think that with daily injections you might have to

be concerned about the amount of cyanide that is released. One of

my docs looked up cyanocobalamin in her PDR and it said something

about cyanide problems if too much was used.

Patti

--

[Guest guest]

Which one are you taking?

Phil

" G. McFadden " wrote:

> From: " G. McFadden " <nmcfadden@...>

>

> Hydroxycobalimin is at least 12 times more expensive. After the

> recent article in the CFIDS Chronicle touting cyano, I am confused

> as to which to use. Bell (or was it Lapp) says cyano and Cheney

> says hydroxy. Has anyone ever tried one and switched and noticed

> any difference. Mike

>

> ====

> i trust cheney more than I do LAPP on this one. after all,

> cyanide is a poison, perhaps not at levels in this for most

> of us, BUT we are known to not detox properly often in cfs.

>

> also, i think that methylcobalamin also works, there are several

> pieces in PUBMED on how it improves cytotoxic tcells (cd8)

> and natural killer cell function... and you don't need a

> methyl donor for this to work, as it is already activated

> with methyl. i must admit, i take this SUBLINGUALLY,

> because the research says this works also.

>

> nancy mcfadden

>

> > This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

Which one are you taking?

Phil

" G. McFadden " wrote:

> From: " G. McFadden " <nmcfadden@...>

>

> Hydroxycobalimin is at least 12 times more expensive. After the

> recent article in the CFIDS Chronicle touting cyano, I am confused

> as to which to use. Bell (or was it Lapp) says cyano and Cheney

> says hydroxy. Has anyone ever tried one and switched and noticed

> any difference. Mike

>

> ====

> i trust cheney more than I do LAPP on this one. after all,

> cyanide is a poison, perhaps not at levels in this for most

> of us, BUT we are known to not detox properly often in cfs.

>

> also, i think that methylcobalamin also works, there are several

> pieces in PUBMED on how it improves cytotoxic tcells (cd8)

> and natural killer cell function... and you don't need a

> methyl donor for this to work, as it is already activated

> with methyl. i must admit, i take this SUBLINGUALLY,

> because the research says this works also.

>

> nancy mcfadden

>

> > This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

Which one are you taking?

Phil

" G. McFadden " wrote:

> From: " G. McFadden " <nmcfadden@...>

>

> Hydroxycobalimin is at least 12 times more expensive. After the

> recent article in the CFIDS Chronicle touting cyano, I am confused

> as to which to use. Bell (or was it Lapp) says cyano and Cheney

> says hydroxy. Has anyone ever tried one and switched and noticed

> any difference. Mike

>

> ====

> i trust cheney more than I do LAPP on this one. after all,

> cyanide is a poison, perhaps not at levels in this for most

> of us, BUT we are known to not detox properly often in cfs.

>

> also, i think that methylcobalamin also works, there are several

> pieces in PUBMED on how it improves cytotoxic tcells (cd8)

> and natural killer cell function... and you don't need a

> methyl donor for this to work, as it is already activated

> with methyl. i must admit, i take this SUBLINGUALLY,

> because the research says this works also.

>

> nancy mcfadden

>

> > This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

Hey folks,

Just a quick check in simply because it has been awhile. Last wed. night, I

started getting sever pains in Mt abdomen. Well, I sort of played it off

awhile, and then realized that it was not going any where soon. Off to the ER

I went. After a few tests et. it was determined that I had acute

appendicitis. Was wheeled into the OR around 3:00am, and was in my room by

5:00. It was a little harder retrieving, as the good OLE colon, and part of

the intestine had actually covered the bloody thing. I got a spinal, and I am

really glad I did, and have just finished a course of Augmentin tid 500 mg x

5 D. I also happened to be on Cipro, at the time, and Doxy, as RXed 100 MG

am, and 200 mg qhs. I asked to leave on Saturday, and the DR reluctintly

allowed this. Anyway, the tests showed two inguinal hernias, and he wants to

operate ASAP. I am certinally going to wait for this to heal. Besides being a

bit more sluggish then normal, and a little fog, I seemed to have made it,

and am now waiting for the stitches to dissolve.

My second reason, for writing, is that I did get Noni, and it seemed to help

calm the beast. I Lost my invoice, so who ever paid for it, please contact me

back list. I wish all of you a great holiday season, and the light that it

brings. Mike In Delaware.

[Guest guest]

Mike.Sending you healing wishes from New York. Please heal quickly and happy

holidays.

[Guest guest]

I take methylcobalamin 1,000 mg sublingually in the morning and the same at

night. I never tested deficient in B12, but when I started taking it morning

and night, the tingling in my feet went away and my ears don't ring as much

any more. I hear methyl and hydroxy are better than cyano because

cyanocobalamin splits in the body and becomes cyanide and cobalamin.

However, when you take methy colbalamin, it can decrease you melatonin for

some reason, so I take 3 mg. of melatonin once a week. It all seems to work

quite well. You can get the methylcobalamin at Life Extension, www.lef.org.

I would stay away from the cyano.

Dianne S.

[Guest guest]

Dianne, will you please excuse me for nitpicking for a minute? I want to

clarify something: B12 is usually dosed in mcg's not mg's. You stated you

take 1000 mgs. Do you take 1000 mcg's? 1000 mg's would be a VERY large

dose--if you're taking that much, I'd love to know.

Thanks for your input.

in North Carolina

> Re: B-12

>

>

> From: FDSCAFE@...

>

> I take methylcobalamin 1,000 mg sublingually in the morning and

> the same at

> night. I never tested deficient in B12, but when I started

> taking it morning

> and night, the tingling in my feet went away and my ears don't

> ring as much

> any more. I hear methyl and hydroxy are better than cyano because

> cyanocobalamin splits in the body and becomes cyanide and cobalamin.

> However, when you take methy colbalamin, it can decrease you

> melatonin for

> some reason, so I take 3 mg. of melatonin once a week. It all

> seems to work

> quite well. You can get the methylcobalamin at Life Extension,

> www.lef.org.

> I would stay away from the cyano.

> Dianne S.

>

> > This list is intended for patients to share personal experiences

> with each other, not to give medical advice. If you are

> interested in any treatment discussed here, please consult your doctor.

>

[Guest guest]

in North Carolina

Sorry about the mgs. (cyanocobalamin) It is mcgs.

Dianne

[Guest guest]

In a message dated 4/11/00 2:13:15 PM Central Daylight Time,

egroups writes:

<< To whomever may be interested,

I am still trying to unload 15 vials of B12, 10,000mcg injectable,

expiration date, May 15. >>

Is it hydrocobalamin and did you get it from College Pharmacy or one of

the usual sources? If so, I will take it off your hands if you need some

money.

Are you sure you won't want to use the vials in the future?

Mike