Does anyone know of a good reliable source for Methylcobalamin patches + any info on dosages to be used ? How about sticking ability ?

Hi guys, I'm at present working on Myelin synthesis and looking to do this using Methylcobalamin. I have problems with the 5th and 8th Cranial Nerves, which give me a condition called Facial Migraine, to which I hope one day to find an answer. I was of course short on B12 (Serum 131) now 478 and addressed this via Cyanocobalamin + B1 B2 B3 and B6, which although sucessful in raising my B12 , does not work as well as Methyl on the Myelin problem. Any inputs regarding Myelin synthesis research would of course be most welcome. My serum Folate is 7.1 on a (3 to 20) scale and my Hb is 15.6. All my FBC, - U's & E's - LFT's etc. etc. etc. are all excellent. I have of course also run I.F. / P.C.A. and HoloTc / MMA tests all good.

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8 Replies

  • Hi, I'm currently using Vie Patches B12 Plus 10 High Strength Patches, 1 per week in addition to 1 injection every three months. I use these from the 6th week following my B12 injection from my GP because symptoms return and GP will not give B12 more frequently. She says the patches are placebo effect! It's not, believe me. They stick well and I've had no reaction to them. You seem to be treating yourself completely? Are medics unhelpful?

  • Hi doityourself

    Many thanks for your reply, Well I'm at present working on the second stage of my recovery program and whilst my own G.P. has not been all the help he might have been, I have to thank him initially for just dropping the B12 element into the bloods I run every year or so. No

    the medical world is not at all unhelpful, quite the reverse, I'm lucky enough to work with some very eminent people on that side of things, who will always respond quickly to my E-mails etc. Sadly the field of B12 seems to be rather new to almost everyone and with cut backs and budgets galore, the medical world often has to cope with it's arms tied behind it's back so to speak. With backing and guidance, I feel we are all still learning about B12 and I'm simply trying to do my bit for both myself and anyone else I may be able to help along the way. You state you find the Vie patches good, in what dosage and where do you obtain them from, what is the price and delivery like ?. It's always nice to follow the lead of a satisfied customer I feel. Many thanks once again for your input.

    Best wishes B12 Turbo

  • I have used these patches with little success. My B12 serum levels were 80 when diagnosed and folate was low down at 2. I have now taken matters into my own hands and am still self injecting once a week some 3 years later and managing to keep myself stable although I wouldn't say fighting fit! Daughter has a low serum level at 234 but they say she is not low enough to treat. She is 16 and has been suffering from "unexplained" according to the GP, symptoms for 4 years now. The vie patches don't appear to make a difference to her either but we are all different and what works for one may not work for another. You can purchase them from Amazon.

  • Hi Luna

    Many thanks, I fully understand your position and yes 80 is very low, I'm glad you've been able to self inject and find a route to some kind of normality. However, I would ask your GP to refer you to a consultant at your local hospital, they seem to have a better understanding of the problems and if your anywhere near London make that Guys / St. Thomas's Hospital, they have a program working specifically on B12. Re your daughter, your GP probably works on a scale of 150 to 1000 anything between those figures is fine according to him. Sadly he couldn't be more WRONG!!! I understand what you say about us all being different, so I'm probably going to try the patches route to begin with. Many thanks for your input, always much appreciated. Best wishes to you and your daughter. B12 Turbo

  • Hi B12Turbo

    I've been using Vie Patches too, along with an oral spray and sublinguals. At least one of them must be working for me, because I feel so much better! I even feel a little less 'braindead'. And since using the spray my mouth is no longer on fire every morning. I'm having to self-treat because my GP has given up on me, insisting that all my symptoms are due to depression/anxiety after a bereavement. Tried to get a second opinion from another GP, but she read through my notes without listening to me, and then just ridiculed me.

    The only problem I've had with the patches was during the summer, when they came loose in the hot, sticky nights. Other than that they stick very well - even in the shower. I tend to get a bit of a rash if I forget to remove one after 24 hours.

    I'm thinking of being brave and trying out self-injecting next! Not sure where to buy them though...

  • Dear Braindead

    Many thanks for your response, I have looked at the Vie Patches on Amazon, but the ones I have seen contained Vit K, which is normally used in the coagulation of blood, as such, it is of course a very dangerous constituent, if used without medical supervision. The maximum dosage in Britain for an adult is rated at 60mcgs per day, whilst in America they rate it at 60 to 80mcgs per day. The Vie Patches appeared to contain a 150mcg dosage and if this be so, then I felt it was not for me.

    I would just say, that like many people, you appear to be having trouble with your G.P.. However, Irrespective of how good your self medication makes you feel, unless you have taken tests for Intrinsic Factor, Parietal Cell Antibodies in the first stage, followed by HoloTC and if necessary, MMA testing, then you really are shooting in the dark and without being sure which types of Cobalamin (B12) you are using and at what dosages, along with other B vitamins such as B2 which helps to activate B6, which in turn help with the absorption of B12, then you may not have a fully comprehensive medication program. May I now respectfully suggest, that you return to your G.P. and ask to be referred to a Haematology Consultant at your local hospital, they will normally be far better acquainted with your needs, with regards to B12 , in addition, please take your medications with you for the Consultant to analyse. The HoloTC and MMA tests can be carried out at Guys / St Thomas's Hospital in London and by post. If you wish to talk to them then Call Denise O'blien on 0207 188 7188, they are the B12 experts after all. I would just add, that it appears that TOO many G.P's diagnose depression and medicate accordingly, often at times, even leaving patients with a long term dependence.

  • Goodness me - wild horses couldn't drag me back to my GP's surgery!

    All of my B12 supplements are methylcobalamin. I'm also taking folic acid and a multi-vitamin & mineral supplement. I've learned a lot from the wonderfully helpful people on this forum - Nostoneunturned, Hampster, and many others. And I've read Martyn Hooper's book, as well as 'Could it be B12?'.

    There are a lot of auto-immune diseases in my family, including PA. I first consulted my GP three years ago with what turned out to be lichen planus and he was very helpful, his speciality being dermatology. The consultant dermatologist to whom I was referred told me that there would be a reason why my immune system had been compromised, but made no suggestions.

    I realised that many of my other health problems were similar to some of my mum's, who had PA, so I did a bit of internet searching - and there was my 'eureka moment'. Back I went to the GP, who smiled very patronisingly and said, "if only it were that simple!" He had already included B12 in my blood tests and the result was very high. But this was obviously because I had been taking a multi-vitamin - my diet was very poor, finding it almost impossible to eat anything solid due to an extremely sore mouth. I was as ignorant of the difference between serum B12 and active B12 as my doctor apparently was/is. He agreed to test for IF antibodies, but this came back negative.

    I returned home, did some more research, and discovered methylcobalamin. Armed with my new knowledge, I decided to consult a different GP in the hope of a fresh opinion. Unfortunately, her mind was completely closed! I believe I have now been labelled a 'cyberchondriac'. So - I decided it was worth experimenting with methylcobalamin supplements. But then I read about the test for active B12! I managed to get a referral letter from the second GP (she was obviously humouring me), stopped taking the supplements, and had the test. But the result was high. I believe that I probably didn't leave enough time before taking the test, and skewed the result.

    Which leaves me with no other option but to self-treat. I haven't a hope of being properly diagnosed either way. I'm on my own. I've decided to take the supplements for a year, and see what happens when I stop. Watch this space, as they say!

  • Hi Braindead

    I know what you mean about your Mom, I had the same type of background with my Dad 40 / 50 or more years ago and of course no one ever mentioned B12, even with all the Neuro damage my Dad displayed after 3 major nervous breakdowns, sadly we can never turn the clock back, that's why it's so important to address B12 problems ASAP.

    Regarding your having no other options, have you thought of changing your doctor / or surgery even. You could also take your case to your local area health board, if you decide to think about that, then there is a proper procedure to follow, which I did myself. The other thing is of course, you could always consider leaving off your medication and taking another HoloTC test at Guy's, I'm sure that once your G.P. have referred you, they can always carry out further tests to your instructions, Denise will always confirm such facts for you I have no doubt. Her direct line is 0188 188 7188.

    Hope you sort things out and soon begin to feel a lot better for Christmas.

    Best wishes B12 Turbo

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