Thinking cyano isn't for me

[Ladyawkward]

I've recent realized my dr uses methyl for injecting into my veins (infusion) I notice when he doesn't use it and only uses magnesium. For several times I thought it was the magnesium giving me energy and most of my fibromyalgia pain gone and headaches! I just got an infusion yesterday and still feel awful so I can tell he didn't use methyl with it! Going to ask him my next appt if he can prescribe me methyl instead f cyano. I've been on cyano shots twice a week for almost 2 months and don't feel any benefit. I'm also taking cofactors (5mg folic acid, 60mg iron and lots of potassium foods) anyone have an issue where they think their b12 isn't working and they need a different form? :/

[ndodge]

I was on Cyano for a year-monthly injections and it did nothing at all to alleviate my neurological symptoms or fatigue. When I switched to methyl injections my symptoms and fatigue went away as long as I get enough-1mg. 3x a week.Plus sublingual everyday!

[hendry in reply to ndodge]

I had daily shots of methyl. for about 3 months however when I switched to hydrpxy. the improvement was marked.

[ndodge in reply to hendry]

Hi, hendry,

It is interesting to me how different people respond to different forms of B12. Do you still inject daily with the hydroxy? I would love to try it but am in U.S.and it is not used here as far as I can tell.

[Foggyme Administrator in reply to ndodge]

Hello Ndodge. If you want to try hydroxocobalamin, you can purchase via the Internet, from mycare.de or versandapo.de. People here use both companies, have no problems with payment / quality, and the deliveries arrive quickly.

However, not sure if there are any restrictions in place with sales to the USA.

Take care xx

[ndodge in reply to Foggyme]

Thanks for thinking of me foggyme!

I am going to ask at the compounding pharmacy where they make their own methyl if they can make hydroxo, as well. I bet they can. I am curious to see if it would last longer than methyl. You've used both, right? Which works better/ longer for you? Thanks again, xx

[Foggyme Administrator in reply to ndodge]

I've fairly recently added the methyl after being on hydroxocobalamin every three months for the last four years. My symptoms always returned after about four / five weeks and I limped along waiting for the next jab - like many people here.

After being here, I decided to take things into my own hands (or syringes).

I now inject hydroxocobalamin every four weeks and decided to add 1mg methyl, every other day, for now, to see if I could get any further neurological improvement.

It's quite difficult to sort out what affects what (if you know what I mean).

However, I've discovered that the methyl has given improvements that I did not notice after four years on the hydroxocobalamin. For instance, black toenails (yuk, sorry, TMI) now pinking up, sleep patterns better, frequency and urgency seems better controlled, and mood lighter.

I also take sublingual adenosylcobalamin to go with the methyl (but just twice a week).

I do think that the hydrox seems to work for longer than the methyl and I've found it good for vision. It also seems to give an energy boost that I haven't particularly noticed with the methylcobalamin.

So...for the moment...they both seem to add something worthwhile in terms of reducing symptoms.

It's still early days taking both and I'm logging symptoms to see if I can further identify which improvements are due to which cobalamin.

And I'll reduce the methyl if I come to a point where no further improvement is taking place.

But all this is just me and others may have different outcomes.

It's all a bit of a tease isn't it!

Would love to hear how you get on if you try the hydroxocobalamin.

If we ever get to do the magical tea ceremony, we'll have to add an even more magical B12 ceremony!

Take care xx

[ndodge in reply to Foggyme]

Ha ha, that's great, yes we can add b12 to our magical tea ceremony!

Thanks for your very informative reply about the differences you noticed between the different cobalamins.

I am so glad to hear that the methyl has healed you further.

The methyl works great , for the most part, but I could use more energy and it would be wonderful if it lasted longer. Cyano is useless to me and I did try adeno sublinguals but did not feel so good on them and my energy level went way down. Almost as if the adeno and methyl were competing for the same receptor sites! The only one I haven't tried is hydroxo. I'll let you know how I do if the compounding pharmacy can make some up for me. And keep me posted on your scientific data!

Cheers, Nancy

[Foggyme Administrator in reply to ndodge]

Hi Nancy. Will let you know if I notice anything else! And oh my, there's so much to notice!

Let me know if you have trouble getting the hydroxo - happy to donate some of mine if you want to do a trial.

Keep cool, keep well, keep happy xx

[ndodge in reply to Foggyme]

You are so thoughtful! What a lovely generous offer! I'll check in with the pharmacy this week-there is a pharmacist there who is very conversant regarding b12. I'll keep you posted.

Thank you, again. Be well. xx

[Foggyme Administrator in reply to ndodge]

Would be a pleasure. Will await incoming 😄😄.

[Ladyawkward in reply to ndodge]

I plan on (for life since my b12 thing isn't diet it's from a autoimmune disease in my stomach) that I'm fine wth injecting on my own twice a week even more. If methyl works I definitely am going to do it every couple days or so for a while

[Ladyawkward in reply to Foggyme]

B12site.com has all forms of b12! I ordered syringes at first to make sure it's legit and clean and stuff and it comes from Quebec Canada and it got here in washington in 4 days! The syringes looked legit and I've been using them. Might order methyl 30ml it's 150 dollars and cyano is only 50 off there. But methyl seems better quality wise

[Foggyme Administrator in reply to Ladyawkward]

Thanks for the information Ladyawkward. It's quite difficult to get methyl in the UK so I've emailed them to see if they'll ship here. Though goodness knows how much the tax and postage will be if they do!

Keeping my fingers crossed 😀

[ndodge in reply to Foggyme]

My fingers are crossed for you, too, foggyme!. Xx

[Ladyawkward in reply to ndodge]

Great to know! The first couple visits with the dr I felt AMAZING. I assumed it was the magnesium but clearly it was the added methyl! Kind of bad on his part trying two things at once and me not known what made me feel good or not. But he even told me once I got on the shots he didn't feel it was necessary to add the b12 in anymore. Most of my fibro pain and headaches were gone it was crazy.

I hope you guys will stick around to my response in a few weeks when I have my next appt with him! when he gives me the methyl infusion I'll let you know how I feel

[Foggyme Administrator in reply to Ladyawkward]

Hello Ladyawkward. Really good to know that something is working for you. Long may it continue.

Would love to hear how you get on with the methyl infusion.

Take care xx

[ndodge in reply to Foggyme]

I agree with foggyme, so glad you've found something that makes you feel so much better.

Are you going to si the methyl and have infusions, too? I don't think one can ever get enough B12, just curious.

And...I'm not going anywhere, so will be here when you report back.

[Ladyawkward in reply to ndodge]

Thank you so much! I'm thinking with my twice monthly infusions I was getting I'll make sure to tell him to go back to adding b12. I'm going to IM also like I usually do. I do it in my thigh and I'm a pretty small girl so I'm thinking the 5/8 needle gets into the muscle!

The ONLY thing that made me iffy and scared were the first two infusions I know he added b12 to, I had a hard time breathing after the rest of the night. Like someone was sitting on my chest. But I also stopped these potent iron pills too I used to take in the evening and would complain about not breathing well, I switched iron and haven't had an issue but I've also not gotten a b12 infusion in a good month... blah. Too much at a time in me! But I will be back on here in a couple weeks after my infusion

[ndodge in reply to Ladyawkward]

Good luck with the infusion! Hopefully you won't have a breathing problem since you switched the iron. Fingers crossed.

I don't inject into the thigh, husband uses arms and glutes, so I have no suggestions for you on the needle size but if you're thin, that would probably work? Might want to ask around on the site.

Best of luck! xx

[Ladyawkward in reply to Foggyme]

I will keep you posted

[ndodge in reply to Ladyawkward]

Yes, please do!

[Ladyawkward in reply to ndodge]

I had a b complex, methyl and magnesium infusion today and its safe to say I feel a lot better! He said he can't fill a prescription for methyl for me for a regular pharmacy he said he gets his supplies from compound pharmacies and will order some for me

I don't have any chest pain or trouble breathing either like I did a few times with these

[Ladyawkward in reply to Foggyme]

I had methyl and b complex infusion and I feel good! He's ordering methyl for me as regular pharmacies don't order it but at least he said I can switch shots! He even said keep using cyano too it can't hurt

[ndodge in reply to Ladyawkward]

Wonderful news ladyawkward! I get my methyl from a compounding pharmacy also.