Methylcolabamin Injections: I have... - Pernicious Anaemi...

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Methylcolabamin Injections

waveylines profile image
13 Replies

I have tried and tried with the hydroxacolabamin and everytime no matter the frequency I would improve then the efficacy would gradually wear off so would deteriorate again. Over a two year period I ended up on injecting twice daily which seemed ludicrous but that too started to fail for me.

So finally decided to trial methylcolabamim. I decided I would inject alternate days, injecting hydroxacolabamin on the other day. Im pleased to say the methylcolabamin made a big difference and I noticed an improvement -bowel incontinence much better, numbness in feet much reduced. However Ive found methylcolabamin strong so now injecting every third day. Recently experience tummy upset diarrhoea so am stopping the hydroxacobalamin injections as am probably overloaded. I know this is very unusual but would appreciate any comments from others in simular situation who have found a way forward. My methyl vials come in individual seal units so totally protected from light. Ive found out Japan use methylcolabamin as their main treatment for b12 deficiency/PA. they dont use Hydroxacolabamin. i take Thornes basic b daily.

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waveylines
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13 Replies
Nackapan profile image
Nackapan

I'm sorry to hear you are having problems again.It it worth trying just the methylcobalamin every 2 or 3 days. Then of that looses its efficacy yoh could switch back to hydrox or try cynocobalamin .

Its very odd this had happened.

I cant think of anything else.

I hope a solution is found. T c

waveylines profile image
waveylines in reply toNackapan

Hi Nackapan thankyou for your kind words and wishes. Much appreciated. 😃Someone I know has mentioned it could be gluten sensitivity -the upset tummy diarrhoea- as she knows several people with this who have the same autoimmune conditons as me so am trying gluten free. Fingers crossed! Am already doing methyl injections every three days. I think I will keep going with the current regime and see what the gluten free diet does. Then Ive changed one thing which makes it easier to see if that changes things. My body is a car wreck!! I try so hard for it to get better!! Haha!!

Nackapan profile image
Nackapan in reply towaveylines

Yes I try hard too and its soul destroying at times when it all goes wrong. One of my daughters is intolerant to gluten and many other things

As a child she was a good eater and only refused cheese

She is also diary free now!

Fodmap helped the laborious process of finding what she can now eat and absorb.

She did like you one thing at a time so you know where you are.

I hope it helps you

.

waveylines profile image
waveylines in reply toNackapan

Thanks Nackapan. My son mentioned the Fodmap which I will use if this doesnt work. Ive had episodes previously where I thought I was gluten sensitive. My cousin is the same -but she says its yeast not grain & I was going with that eating wraps , pitta or crumpets instead. Thought she was right but no ......maybe Ive just got worse!!! Flip!

deniseinmilden profile image
deniseinmilden

Hi! Very interesting, thank you!

It seems that my body doesn't methylate properly and I need a methyl group from somewhere. I use hydroxocobalamin ampoules and then take methylfolate to achieve this.

I'm glad you've found something that works and really appreciate your sharing it with us. It just hi lights how much we are all different and have to be mindful of this.

waveylines profile image
waveylines in reply todeniseinmilden

Thanks Denise. Too early to say if its a solution or not......time will tell. I was doiing the same thing as you with methyl sublinguals but as I said nothing seems to last.....lol.

I was hoping someone would also come on and comment on their own experience of using methyl ampoules .......there has to be others doing this?

deniseinmilden profile image
deniseinmilden in reply towaveylines

I don't think there are many people using it who post on here - hence my interest in your findings.

My only concern is that there is something more going on with your guts than the B12d is causing. I think you should try to get a referral to a gastroenterology team for a proper investigation.

Something obviously hasn't been quite right for a while to have caused the B12 deficiency in the first place and whatever is was may have got worse or other things may have happened.

I hope you get the help you need soon.

Can I ask where you source the methyl injections from? Is it the same process for injecting as hydrox? Interesting to hear the positive impact it is having. Good luck!!

waveylines profile image
waveylines in reply to

Hello Martin. Yes it is. They come in glass ampoules like the hydroxacobalamin but each ampoule is sealed infoil to protect it from light. It is fairly tolerant of temperatures like the hydrox but not light. I inject subcut as usual -you can do it IM too but the only difference is I do the jab in a darkened room so that once Ive opened the protective foils seal I dont destroy it in any way. I dont know if I need to do this or not!!

You can purchase it from the usual German Pharmacies. I do find the no shot methy sublingual tablets help but the injection is far more effective. It is far more expensive than the hydrox ampoules so wouldnt have bothered if the hydrox gave me the necessary effect.

I plan to do a bit of mixing of injections so hopefully can keep the methyl down to what I need rather than only jsing methyl. Have no idea how this will or wont work. All trial and error.

in reply towaveylines

Thanks so much for the info. Do let us know how you get on!

wedgewood profile image
wedgewood in reply towaveylines

Can you please tell us the names of the German online pharmacies where you can obtain the Methylcobalamin ampoules ? Thank you and best wishes .

waveylines profile image
waveylines

I dont know many but Versande.de stock it. Hopefully the new agreement means that route wont become a problem. Lol.... If you use chrome it will translate to english for you unless you are familiar with the German language. The website has Amazon as an option to pay but someone said recently that it hadnt worked.....not sure if thats a blip or Brexit effect.

Bellabab profile image
Bellabab in reply towaveylines

Could try using PayPals instead of Amazon as a payment method?

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