Second call for anyone using or knows where to buy methyl and adeno for injection

[Noelnoel]

Hi all

I seem to be getting nowhere in finding methyl and adeno for injection. This is what we’ve decided on and would really like to try them, in the first instance at least. Can anyone who uses them let me know please

I’ve found the powder form of methyl but would prefer not to have to mix it ourselves

Thanks again

[wedgewood]

Arnika , a manufacturing Pharmacy in Munich used to sell Methylcobalamin ampoules for injection . They did sell to U.K.but I don’t know if they still do . You couldn’t order them online like we usually can from the German online pharmacies we use for Hydroxocobalamin ampoules . You send them an email . asking them if they still send Methylcobalamin to U.K. , and if so, ask the cost .. . .

[e-mail]

or phone them

[phone].

They understand English

[Noelnoel in reply to wedgewood]

Thank you wedgewood. That sounds promising. I’ve had a look at their website but only professionals can view. I’ll give them a call in the morning

Appreciate your time. Are you feeling any better today?

[wedgewood in reply to Noelnoel]

I’m fine today thanks . Just given myself an extra B12. . Christmas stress needs extra help !

[wedgewood in reply to Noelnoel]

I do hope that you are successful in getting the Methylcobalamin ampoules . It’s been 3 or 4 years since I got them sent to U.K.. I used to live in Munich so I know that Arnika is a good company . Best of luck !

[Noelnoel in reply to wedgewood]

Thank you, will give them a call after breakfast

Good to hear you’re feeling better and amazing that you’ve learnt to that degree, what your body needs and just like that you’ve given yourself an extra shot to help you through a stressful time

Sad indictment that we can’t rely on our doctors to advise us but thank goodness for this forum

[Noelnoel in reply to wedgewood]

There are one or two of you interested in the outcome of me speaking to someone from the German website

I’ve called a few more times but it’s always a recorded message and because I don’t speak the language I can’t get any further. I’ve emailed again and will just have to wait for a response

If you want updates just pm me

[Missd66 in reply to Noelnoel]

Hi Noelnoel

Did you get a response by email yet?

I hadn't received my order despite payment clearing on 6th Dec so I phoned (on Thu14th). Took a while to work out how to dial Germany! As you say, the recorded message is in German., so I waited to hear the whole thing hoping someone would pick up at the end. I just got cut off. I tried again and pressed 1 lol! Got through and was able to speak in English but it was the wrong department and there was a problem with the phones so I couldn't be transferred to 'deliveries'. I was advised to either email (& wait a week for reply) or call again today, (Mon 18th), pressing option 2. I was held in queue for a while then spoke to someone. They had to look into my order and get back to me. Then they emailed. There's a problem shipping to UK. They hope to resolve in New Year... it's normally so easy. I can't believe all the problems this time.

I wish you luck! x

[Noelnoel in reply to Missd66]

Haha, that’s funny. Well done for thinking of doing that and thanks so much for passing it on, I’ll do the same tomorrow

Will you be without what you need?!!

[Missd66 in reply to Noelnoel]

Let us know how you get on! I've got enough methyl for January. Although now, the adenosylcobalamin i was using with it has been discontinued 🙄 and I can only find liquid adenosyl with methyl. I have some hydroxo as a standby but other than keeping me alive, it doesn't do a lot for me, so fingers crossed they sort it before I become a gibbering wreck☹️🤪

[Noelnoel in reply to Missd66]

I will

I don’t understand. What’s wrong with liquid adeno with methyl? That’s just what I’m looking for

[Noelnoel in reply to Missd66]

Or is it not for injection? Please say it is

[Missd66 in reply to Noelnoel]

No, sublingual. I've never found adeno for injection. It's inherantly unstable apparently....

[Noelnoel in reply to Missd66]

Yes, having difficulty finding any

So what’s your regime and does it work well for you

[Missd66 in reply to Noelnoel]

I inject 5mg methyl every 3rd day, (+ adeno sublingual, folate), so a box of 10 amps lasts 1 month. I increase frequency if things are particularly busy or stressful. I tried to keep costs down by alternating with hydroxo but it's just not effective for me. I used to be on much higher/more frequent doses but have been able to reduce this over the years. Everyone is different and you get to know what works for you

[Noelnoel in reply to Missd66]

This is what is flummoxing me about this whole PA thing. Is that what you have?

[Missd66 in reply to Noelnoel]

Yes, I have PA and, like most of us, a whole bunch of other autoimmune conditions and medical issues, so it can be difficult to work out what symptoms go with what🙄

[Noelnoel in reply to Missd66]

Right and this is what confuses me

I think I’ve read this ht forgive me if I’ve got it wrong

Liquid B12 has molecules that are too large for sublingual absorption

[Missd66 in reply to Noelnoel]

Some people say yes, some no. The same as some people say methyl doesn't/can't work yet for some it clearly does. I know this doesn't really help. This is why you have to see what does work for you

[Noelnoel in reply to Missd66]

Have you ever tried just adeno sublingual on its own. No injections, no other types of cobalamin

[Missd66 in reply to Noelnoel]

No, can't say I have

[Noelnoel in reply to Missd66]

Is that because you can’t trust that it would work. Apologies for all the questions but I’m asking on behalf of someone else

When I finally get hold of the injections I want I’ll use it too but far less frequently thammmy husband will need to. I don’t have PA but before supplementing levels were low

[Missd66 in reply to Noelnoel]

I've never heard of anyone that just uses adenosylcobalamin. If you don't have PA, you don't need to inject. You can absorb b12 from tablets/supplements. If your levels were low before supplementing, that suggests they're not now/have improved and that it works for you so why would you want to inject if you don't need to? I'd rather not, if I had the choice!There are others on the forum who would be far better at explaining everything. I only joined the conversation to pass on info regarding supplies from Arnika... which hadn't exactly been helpful with the current issues 🙄🤪.

Good luck!

[Noelnoel in reply to Missd66]

It was very helpful because I wouldn’t have thought to choose an option to wait to see what happened. I’ll be calling them around 3. So I’m really grateful for that

Thing is, I don’t have PA diagnosis but I’m suspicious. It would explain a lot of long-standing issues. I only want to experiment with it to see if anything improves. My plan is to inject two days a week for a month to see. If nothing much happens I’ll just continue with oral. If I notice big changes then I’ll start investigating properly. I don’t have the will to tackle mine at the moment, I’ve just been through a battle to get my husband sorted

I've never heard of anyone that just uses adenosylcobalamin

My point on this was: if you think adeno sublingual works wouldn’t it be worth trying that and methyl together sublingually to see what happens

[Missd66 in reply to Noelnoel]

It's recommended that you take adeno to supplement methyl. (I believe its because Methyl is artificial and can't convert to adeno, whereas hydroxo converts to both... IF you are able to process it, which I'm not). I tried methyl/adeno sublingual combo many years ago but I was using probably 10x recommended dose daily, spending a fortune and rotting my teeth in the process. I did it just to see if I thought methyl might be better than hydroxo. I was then put in touch with a private doctor, (sadly no longer with us), by PAS, given methyl on a drip, shown how to inject and never looked back.I'm assuming if you're going down the methyl route that you have tried Hydroxocobalamin and it doesn't help?

[Wwwdot]

Hi Wedgewood and Noelnoel

I hope to walk the same path. I have not yet sourced ready for injection ampules only powder too. Let’s keep in touch as we appear to have a similar direction of travel.

🤗🤗🤗

[ren41]

Hi Noelnoel, pleae let us know how you get on; I've read that methylcobalamin helps with neuropathy and I do still suffer from it despite being (I think) otherwise pretty well medicated on cyanocobalamin injections.

[Noelnoel in reply to ren41]

Hi ren

Will do. Tried today but no luck. Will call again after the weekend

[Missd66]

I have just ordered from Arnika (as per Wedgewood's reply), by email, which I have done for several years. Their system is currently being updated and they were taking a week to answer emails so you may be better off phoning. It was €46.13 per box of 10x 5mg/ml methyl plus €21.01 shipping, so approx £40 & £18 depending on the exchange rate on the day. Beware the £135 limit for VAT! Helvella has done a post on this. I think it includes postage so I only ordered 2 boxes as 3 boxes plus delivery would have been about £3 over and incurred fees. It's a pain, as 2 boxes won't last me long, so I'll have to keep reordering. The last time I ordered in bulk, (for the 1st time after Brexit), I incurred nearly £100 in fees- VAT, handling, extra delivery 😢 . Quite a shock! I don't know of any injectable adeno and use sublingual to go with the methyl. Good luck!

[Noelnoel in reply to Missd66]

Have tried calling but line busy. Will try later

You may or may not be aware of this particular product but this is the correspondence I’ve had and am still considering which way I’m going to go. You might find it more cost-effective, I haven’t done the sums

Photo

[Missd66 in reply to Noelnoel]

The Arnika ampoules I use are 5mg. (Not sure if they still do 1mg). Many years ago I used multi use vials from America, supplied by a reputable UK source which is no longer available. Then Arnika from a UK clinic, and now direct. Its the best/safest option I've found after a lot of research ...

[Noelnoel in reply to Missd66]

I’m quite new to this, so forgive the questions

Do you take 5mg in one go. Is that a high dose

[Missd66 in reply to Noelnoel]

I used to take higher doses and even doses twice a day under medical advice when 1st diagnosed. (Privately, not GP). I'd been symptomatic since my teens, not diagnosed until I was around 40 and had a b12 level below 20. Now I get by on 5mg every 3 days, unless I have a particularly stressful or busy day, then I'll have another shot. Everyone is different and it's a learning journey. Keep asking questions. There are many on here able to offer insights and advice, especially our knowledgeable moderators. Methylcobalamin doesn't suit everyone. It really is a case of finding what works best for you. Good luck!

[Noelnoel in reply to Missd66]

Thank you

Sounds like a life-saver for you. Do you feel “normal”now

[Missd66 in reply to Noelnoel]

Million dollar question...what's normal?! Certainly better than I was, but not my old self. I do have a number of other medical issues and autoimmune conditions often come in multiples. For me, methyl rather than Hydroxocobalamin was a lifesaver. ..