B12 Oils: I have been sent a website... - Pernicious Anaemi...

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B12 Oils

jgm-44 profile image
12 Replies

I have been sent a website offering B12 Oils in various combinations, in a 'pump' spray form - b12oils.com - and before I order one of their products, I was wondering if anyone else has used these sprays and with what results? Apparently you have to spray onto your forearm after showering, either each day or as needs dictate.

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jgm-44
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Poppet11 profile image
Poppet11

I did write a very long and sarcastic post - but I deleted it.

I wonder if they are thinking of selling oils to people with motor neurone?

So, yet again, we are becoming someone else's profit. Not only the big pharma companies who will be sick if the public cotton on to the fact this is a serious illness first and an anaemia second, is it?

There are starting to look like more vested interests in this little fiasco than genuine interests.

...........I'm fizzing.

Something else to try. Let's all not bother having injections and just suck sweeties, smear our skin, or stick on a patch - hey, our B12 levels might go up!

Everybody is making money out of us one way or another - and I'm peed off with it.

I am really starting to wonder why no one (except me being Miss Big Gob Almighty and a few others on this site) has promoted the BMJ article which tells people this is a serious neurologically degenerative condition rather than a blood condition. Incidentally, I have no vested interests whatsoever. Most people I drive crazy (I ain't gonna win any popularity contests and I don't care to - If you are expecting 'Aww. Big Hugs' you are going to be sorely disappointed) but I have bust a gut to let people know what possible danger they are in and to make them aware of significant research which can make doctors aware - because not only our health but the health of the children of the future depends on it.

Secondchance profile image
Secondchance

Weird as B12 is water soluble

Poppet11 profile image
Poppet11 in reply to Secondchance

Okay, I admit it, I missed that!

Due to this appalling oversight on my part, I did an experiment. Very scientific, the actual B12 liquid does not mix with oil.

Now, that already contains water so does it mean the crystals would? I know, it's probably a stupid question but ...

jgm-44 profile image
jgm-44

Thank you, Poppet11 & Secondchance - I hear you - I understand you have to spray this 'oil' (??) on your arm after bathing and not wash that area for 6-hrs after application. Would seem to mean it would work like a 'patch' but maybe quicker. I've not used a patch - perhaps someone can post as to their usefulness ??

Poppet11 profile image
Poppet11 in reply to jgm-44

Well, I can't post as to its usefulness, but if it doesn't work you risk permanent neurological damage. The reassuring information on the website informs us that people haven't shown sensitivities to the oil. That's it, is it?

Retren profile image
Retren in reply to Poppet11

regarding the B12 oils i found on some site or other a number of people had had adverse reactions to the oils.Anything is possible.I have also been on a site which got me thoroughly discombobulated with technology and explanations to someone who seemed to have taken over her husbands management which also was strange.

Frodo profile image
Frodo

If you look at Dr Myhill's site (specialist in treating M.E. - one of the things she says must be addressed first is B12 even if levels have been categorised as "normal" ) she has a rationale for using transdermal nutrients. She now sells them online as sprays, and uses something in the sprays called DMSO which carries the nutrients easily through the skin (she explains it better than me). She says that 6% of 5mg of B12 is absorbed this way as compared to 1% in the gut. There is a lot of useful info on her site. I think she has developed this method for people who can't inject or can't get access to injections and can't absorb nutrients effectively via the gut. *this is just FYI - I'm not endorsing this and haven't tried it*

Poppet11 profile image
Poppet11 in reply to Frodo

I like Dr Myhill but I'll tell you something - I don't think she gets the neuro damage thing either.

Try telling someone with motor neurone that spraying anything on their skin is good enough - if it's good enough for us then it should be good enough for other conditions of neurological degeneration.

It wouldn't even be considered, at least without proper trials, would it?

Frodo profile image
Frodo in reply to Poppet11

I totally agree with you. A very good point. I think Dr Myhill might listen though, because I sent her an email asking what she thought of transdermal patches and she actually replied. (I'm not her patient, I just read the info on the website).

Mind you, she is already working outside the box, and as I remember (brain fog!) left the NHS because she couldn't give people the treatment that would help them, & the establishment have since tried to stop her several times even though she's helping people, like they did with Dr Chandy.

Plus I don't think she's advocating transdermal as treatment for B12 Def and neuro damage, but for her ME/CFS patients who can't get injections (because NHS GPs aren't allowed to prescribe it for 'fatigue', especially when serum test levels within what they call 'normal' range, am I right?)

I wonder given the attitude to B12 def whether many people dumped in the ME/CFS bucket are actually B12 def and/or hypothyroid. Just speculating.

Poppet11 profile image
Poppet11 in reply to Frodo

I agree about Dr Myhill. I think she is advocating it for ME/CFS rather than B12 deficiency. But I still think even she is missing a beat.

I've said over and over that many patients with 'atypical' diagnosed neurological conditions ie MS and others, plus the neuroloigically degenerative conditions of unknown cause ie ME/CFS and certainly fibromyalgia - are not. They are B12 deficiency. It's really simple. B12 deficiency is not diagnosed, because, as we so clearly prove day after day, doctors haven't got a clue about it.

They don't know what it does (most of them think of it as a blood condition)

They think they are looking for neuro damage following an anaemia.

They think if the prevent or reverse anaemia then neuro damage is prevented or reversed.

They think it is treated once all serum b12 bloods are returned to normal.

They do not know neuro damage can be permanent.

I had a very deficient b12 blood test overlooked for nearly a year. I had severe neurological symptoms. I was left with some of those symptoms which is now resulting in muscle wastage.

Which doctors out of the ones I've had contacted with have ever said 'Hey, that muscle damage is probably due to your b12 deficiency going over-looked!'

One. And he is French.

Not one person I've spoken to has focused in on the fact my muscle damage was caused by B12 deficiency. Now that's shameful considering how many knowledgeable people are supposedly around.

We see all over the place that people mention how B12 deficiency is linked to ME, CFS, Fibro, Dementia, MS yadda, yadda - but when do we ever get these misdiagnosed patients put in front of us (and the medical profession) and the problems explained? Never.

I've said before to many people, in the US now, B12 deficiency misdiagnosed as MS is in the top 5 medical law suits.

They are just sticking misdiagnosed B12 deficiency, depending on how it presents, into whatever category of 'unknown' it fits into.

It must be costing thousands of lives globally every single day.

Frodo profile image
Frodo in reply to Poppet11

I agree, it is absolutely terrifying. Your story and some of the others on here are beyond belief. I'm also horrified by all the people immediately classified as mentally ill and put on anti-depressants et al, with minimal medical testing and diagnosis as far as I can see.

Poppet11 profile image
Poppet11 in reply to Frodo

Yep, it is terrifying.

Much as I would like to say otherwise, I never found one person in the UK that I could sit and discuss permanent damage with. Not one.

I'm sorry, but you can't tell me (not that you are!) that people know what they are talking about because they clearly don't.

Imagine the headlines if this was common news - Some Multiple Sclerosis Patients Actually Have a Simple Vitamin Deficiency!!!!

Nobody is doing it. Nobody.

And don't even attempt to go the places where it causes mental health problems. How on earth those people could get heard even if they, like us, knew the cause, I don't know.

I had never had time off work. I had no debts. I had my own home. I had a commendation HND, a 2:1 Hons BA and in my previous career had been a lecturer. Oh, and I learned Mandarin simply because I felt like it.

...and they still talk to me as if I'm retarded.

Some people must be living in utter hell. The doctors who won't listen to patients should get out of the game. Seriously they are causing more harm than good.

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