Hi Tina. I was thinking about you this morning after a really tough day yesterday. B12 deficiency can be such a devastating disease BUT treatable and manageable. For me, getting worse before you get better is so counterintuitive but since I have personally lived it for me there is no denying it. Anyway, I wander. My take alway from this Mayo (which is right down the road from me) piece confirms-under diagnosed, stopping treatment is not a wise, tests don‘t always tell the whole story, blah, blah, blah. They get some of it right——
not all, but some. Folate is critical to good B-12 management.
https://www.mcpiqojournal.org/action/doSearch?text1=The+Many+Faces+of+Cobalamin+(Vitamin+B12)+Deficiency&field1=AllField
How are you doing today? I am doing better today.…but this refeeding isn’t over yet
Hi Idie. Thank you very much for thinking about me, and asking. I find myself thinking a lot about everyone on this site, including you.
I'm glad to hear that you have been feeling better today. I actually came back trying to find your nighttime, before bed, and overnight "recipe." Do you just use straight potassium? And how much and how quickly do you drink this?
I just discovered something that is huge for me (maybe). Hopefully I will not forget. But low potassium causes bloating and acid reflux! I'm taking B12 to hopefully cure reflux. But this potassium situation is making things a LOT worse.
I had a dreadful night and morning. I can't keep taking coconut water overnight (which also makes reflux worse bc any calories being digested within 3 hrs before sleeping...cause reflux). Yet I can't seem to survive without the coconut water. It's been truly a hellish situation. (Initially the B12 made my reflux better, but now it's worse.)
I did *finally* receive some folonic acid in the mail. I took about 1/2 a capsule when that arrived at 4 p.m. (I hope that wasn't too late). But that helped that pain in my throat, mouth a little. I'm drinking potassium chloride in water right now (about 375 mg but not sure I'm comfortable finishing that much). It's about 5:45 p.m. here. (I've had a bad reaction to methylfolate; however I might still try taking *some* in small doses included within an iron pill designed for absorption; not sure yet.)
I know for some people this gets worse before it gets better. But really a LOT worse?? Sleep is dreadful. The reflux has been up and down but lately, with the C water, and I guess the low potassium, pretty bad. How much worse was it for you? I guess you said it took about 6 weeks to get better. The other scary thing is that there are definitely people online for whom this never gets better. The B12 lady (kind of like a consultant) said that many people stay stuck bc essentially they don't understand the cofactors. I really, really hope that is true.
I might also try hydroxy (which she thought would be a good idea -- she said some people do respond better to hydroxy and that my experience might be totally different) even though I really don't want to make the switch. I feel like I at least need to try, to see whether I have any better time with this potassium situation.
I did take your advice today and only walked outside for 30 min (slowly; mainly just for Vit D). Then I came back indoors and did an *easy* 30 min on my ellipitical. I like to exercise for mental plus, at least in the past, it helps me sleep, and feel normal. But today was one of the worst days I've had, with nearly constant throat pain before I took the Folonic acid, and then it only improved just slightly.
So I have a long way to go. But if you wouldn't mind sharing your recipe again (for potassium, at bedtime and overnight), I would really appreciate it. And again -- how much worse does it normally get?
Thank you again and I wish you sweet dreams tonight Idie!
ETA: I found your prior comments about your potassium dose. Sorry to ask again. I'm definitely somewhat out of it because I haven't been sleeping well for many nights. I guess the only thing I'm still wondering is whether you drink your potassium slowly (like right before bed, and in the middle of the night). I'm really terrified of drinking potassium too quickly and having a major heart reaction. So I've been sipping every two minutes until the drink is gone (but this has been coconut water; I'm much more nervous about straight potassium in the middle of the night).