changing hydroxo and methyl dosage.

[qwertystar]

I’ve been taking hydroxo 1500ug one injection a day for 2 years with folic acid and no improvement.

A month ago I added methyl 1500ug one injection a day with adeno and it’s been helping but as not much as I hoped my physio has noticed a difference. I feel one injection isn’t enough! I’ve now decided (today) to try two hydroxo and methyl injections a day. I was inspired by WIZARDS recent post. I’m now trying to find my happy medium.

I currently can’t walk without crutches, for balance. I’m determined to fight this! I will keep adding new posts of any updates.

[Jillymo]

It seems we are on our own with little help from our practitioners.

Remember we are all different so do what you feel works best for you.

Good luck I hope the extra injections give you some improvement. 💐

[qwertystar in reply to Jillymo]

Thank you! I’m so grateful for finding a place like here to share experiences. My NHS doctor was awful and refused to give me regular injections, while I was crying in his office!

My private functional doctor has been encouraging me to self inject.

[Noelnoel in reply to qwertystar]

Can I ask from where you got your adeno and methyl injections please

[B12life]

you might have a b1 deficiency.

This guy has fantastic information on it.

I take 200mg of thiamax a day and a b-multivitamin from desert harvest because they leave out b6. Then I take 50mg B6 in P5P Form. If the b6 is not in that form it will have side effects

[qwertystar in reply to B12life]

I’m taking the exact same as you apart from P5P. I have it but stopped. I’ll reinstate that! Thank you for reminding me

[Showgem in reply to B12life]

Did you mean to add a link? I’d like to look at it please.

[Mixteca in reply to B12life]

How does thiamax differ from Benfotiamine, which I've been taking?

[qwertystar in reply to Mixteca]

Benfotiamine gave me awful side effects!

[Mixteca in reply to qwertystar]

Can I ask what they were? I started them to try to ease my neuropathy and they seemed to reduce burning a little but don't think they're helping me now.

[qwertystar in reply to Mixteca]

I had uncontrollable stools. It got so bad, I had keep rushing to the toilet at work! 🫢

[B12life in reply to Mixteca]

this max if supposedly far more bioavailable.

however I've done well on benfomax as well!

[Hockey_player]

Very best wishes! I hope you have a complete recovery. How long did you live with symptoms before you realized you were short of B12?

[qwertystar in reply to Hockey_player]

I’ve had it since 2015 but I improved. Until recently I was under substantial amount of stress which made me very ill. Since then Im unable to walk unsupported

[Hockey_player in reply to qwertystar]

It might not hurt to get a full physical to make sure that nothing else is going on at the same time. I hope you feel better soon! I hope you also recover your ability to walk unsupported.

[ClareP5]

good luck - experimentation is the answer, if the doctors won’t help.

[Orchard33]

Where do you buy methyl and adeno?

[qwertystar in reply to Orchard33]

Methyl I use the Oxford biosciences and I have a cousin in India who is a pharmacist who posts them to me. I have also purchased from Etsy. Adeno I have the tablets purchased from Amazon

[ACritical in reply to qwertystar]

How do you mix the dry form Methylcobalamin with injection solution, is there a uTube training video to watch? I would like to try this form. However in a safe way.

[qwertystar in reply to ACritical]

If purchasing from Oxford bioscience please leave a note for them to add the solution, Which they will.

[WIZARD6787 in reply to qwertystar]

Well done! Very helpful!

[ACritical in reply to qwertystar]

I have found a uTube video how to do it, nothing to it.

[ACritical in reply to ACritical]

youtu.be/Afy_g3STRvQ?si=eM1...(Not working as expected?)

[ACritical]

Have you had an ‘active’ vitamine D bloodtest done? That’s where a lot of my problems in my legs and arms came from. All vitamins and minerals are important so don’t get stuck on just vitamin B12/ B9. It told me I was chronic deficient in vitamin D as well and was put on D- Cure 25000 ie

It will tackle chronic vitamin D deficiency

[qwertystar in reply to ACritical]

Yes my vitamin D had been tested and my gp wants me to reach the optimal level. Range is 50nmol/L - 250 nmol/L, my result is 144 nmol/L

[WIZARD6787]

I hope it goes better for you.

I have had much improvement using a rational approach as the medical approach failed to achieve results acceptable to me.

Pretty much the medicial approach made decisions for me without scientific back up.

[chrisbuy63]

Please keep us posted , it sounds like you are in a bad way (as am I) , any improvement is a positive when you get so bad you can't stand or walk. I do not inject everyday and usually once a week but like you am recently trying 3 types of B12. I actually feel worse since adding the methyl ones but as I have read this could be a start up shock to the system. that we need to endure to see if improvements follow after initial startup symptoms.

I wish you well, I really do!

[qwertystar in reply to chrisbuy63]

Thank you. I feel better increasing my injections and I’m determined to get better. I understand this can get one down but keep fighting! The nhs failed me.

I wish you well x

[MrJustatip]

You can't walk without crutches, wow. I know that when I'm sitting it takes me a few seconds to stand up and I have to stretch my legs to be able to walk. For me overall the fatigue is the worst and the lack of clarity of my mind. It's like when someone tells a joke and the person takes a few minutes to get it. That's how it is with me on things such as working or understanding things, etc. I currently take Methylcobalamin on M-W and F. I'm starting to think I need maybe a fourth shot per week. I've just lost my sharpness. So, recently I've been told by a hematologist that if I take too many B12 shots in a week it makes it hard on my kidneys. I'm not sure about that, but seems like everyone pushes back on me taking too much B12. Of course, the same hematologist also said I was a hypochondriac and it was a waste of his time to test me for PA and no way would I test positive for PA anyway, but of course I did test and was positive for the IF blocking antibodies. At this time I take 3 shots/week + at least a 1000 mcg day, plus vitamin D 3-4 times/week.

When I was told I had PA, the hematologist himself refused to see me for the FU appointment, instead, he sent in his assistant to break the news. She came in with a weird Plague Mask on and told me the news with the mask on and said she had it on because there was s spike in COVID and she couldn't risk catching something from me. I started crying and she then left the room for 15 minutes before returning to say they could give me a script for 1 cyanocobalamin shot per month for 3 months. I have since started using Methylcobalamin that I get from a store here in the U.S. It's $55.00 per vial which is the most inexpensive I've found so far. I apologize for the long reply, but hope something in my response helps. Good luck in your journey.