Fw: [CO-CURE] NOT,REQ: Threat to Hydroxocobalamin (B12) supply?

[Guest guest]

This likely concerns many on this group..... I recall the Canucks having

less trouble/better price with the good B12. Does this also effect them?

M Lassesen, M.S.

[CO-CURE] NOT,REQ: Threat to Hydroxocobalamin (B12) supply?

> [Moderator's Note: Resent to provide proper distribution.]

>

> From: Judith Wisdom <wisdomjf@...>

>

> Although the numbers aren't known, to my knowledge, since we still have

no

> central registry for ME/CFS, many patients have been finding that the

daily

> injection of Bl2 (1cc) in the form of hydroxycobalamin helps with a number

> of the symptoms central to our illness. I'm one of those people.

>

> When I went to my pharmacy a week ago to renew it, I was told the

> manufacturer was not supplying it right now. Worried, I checked with a

> division of the same pharmaceutical chain, which deals mostly with

> injectibles and supplies them to folks all over the country (U.S.) by

> mailorder.

>

> They researched the problem for me when they found that they also had none

> on their shelves. What they reported back was worrisome. They told me

that

> the hydroxy form of Bl2 is made by only one manufacturer in the U.S. --

> Schein. And that Schein is undergoing some kind of financial

reorganization

> (beyond my expertise in finance to characterize). But the result is that

> they are not producing any more of this product, although they have some

> left that was manufactured before, all with an expiration date of sometime

> in December

> 2000.

>

> What was more alarming was that the information Schein gave out to the

> customer service person doing the research was that they didn't know if

> this product would be produced by whomever will be taking over their

> operation.

>

> Since it is common knowledge that the less expensive form of

> Bl2--cyanocobalamin--can't be taken in such doses without risk of cyanide

> poisoning, where does this leave us?. And do our physicians prescribing

> this know about this? And what alternatives are there?

>

> I am not in a position to receive and answer much private email on this

but

> encourage anyone in a better position than I am to determine what can be

> done. to do so. I should add that not having researched this myself. I'm

> not 100% confident of the full veracity of this, but confident enough to

have

> posted it--since the risks are high to many of us receiving some benefit,

> and the source of my information has,to my knowledge and imaginings,

> everything to lose in providing incorrect information.

>

> If someone is in a position to research this further, where " this " means

the

> possibility that U.S. citizens might not be able to get this product after

> December, and also what alternatives we have, I encourage you to do so and

> post your information on Co-Cure. If you decide to write me directly don't

> necessarily expect a response. I'm very occupied with other things and

> can't increase my email correspondence, although I'll do what I can.

>

> Judith Wisdom

>

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