Ok so it's 9 months into replacement therapy of B12 and for the most part it is allot better. My questions for those who have already suffered thru this and have lots of great advice for those still lost. I am very grateful for this web site because without each of you I feel completely alone and lost. The Doctors don’t really tell me what to expect I usually get the casual it takes a while to get thru this and that’s an interesting symptom. I guess if you haven’t gone thru it yourself it’s a hard thing to understand.

Question #1

1: It seems that the energy level is better since I do not require tons of sleep. Keep in mind that it's been over 2 years since any real physical activity so here's my question. Did you find that when you did do something physical like wash and wax the car you paid dearly?

I finished the car and felt great at the time :) (proud I was actually able to do it) but of course my arm was sore and my hands hurt horribly. Then the next day I had trouble with noise sensitivity again then the dizziness and fatigue came back horribly requiring several extra hours of sleep. :blob_fire IS IT or WAS IT similar for you?? Does ones life ever get back to normal? What steps did you take in getting back to the energy level you once had and what obstacles did you overcome symptom wise?

Question #2

I am now changing from a shot every 2 weeks to monthly – How were you affected at this change of regimen? I’m curious what I am in for.

Looking forward to and Thanking you very much for your thoughts.
:wave:

Just curious, why spacing the shots out? I would think you would do that after you'd regained energy for awhile not before. I'd worry about backsliding.

Did you dr suggest it?

Jill

My numbers are currently in the 850 to 900 range. My doctor wanted to change over to monthy shots about 3 months ago but I wasn't comfortable with my numbers at the time and figured if something wasn't working right by time my next 6 month checkup arrived I would be right back where I started a year ago. The doctor agreed with me for the extra 3months of shots every two weeks but now wants to try the monthy. He claims that now the two week shots would only be a waste. Personally I don't care about waisting just as long as I feel good.

850-900 to me seems well, normal, especially for someone who had a deficiency - from what I understand the serum numbers aren't really that accurate for someone who is getting the shots - what I mean by that is that the serum number might be higher or normal, but it doesn't necessarily mean your body is replenished - it just means it's doing ok, now. Because of the shots.

I wouldn't try spacing them out - those are good numbers, not sky high or anything. My dr told me that after you've been low, you want them up for awhile so your body can repair the damage. That it takes a long time, much longer than drs think.

If he insists, and I understand how they can be, make sure to be vigilant about how you're feeling. If you get tingles or numbness, insist on a test or another shot. Don't wait - your body will give you signals, but you've got to take them.

It does distress me that drs want to space out the shots so quickly - I know how they can be. But, geez, It's not like you're begging for addicting medicine. It's B12 for heaven's sake - and it's just not an exact enough science to say what's too much or too little. There's really no harm in keep giving them to you, especially if you're finally showing improvement. It's a tough vitamin to replenish.

Take care,
Jill

Joappler - thank you very much for your replies it is greatly appreciated. I swear that part of this condition requires lots of times when you just feel plain crazy. The damage low b12 causes is unreal - it took me awhile to come to grips that one vitamin or lack thereof could do all this damage to a point it could kill you. I do feel better but it seems like one step forward and two back. This condition has already claimed a little over two years of my life. One year I wasn't aware what was going on - six months of he** and attempting to find what was wrong and now 9 months of recovery. I guess what I am trying to say is I am tired of how much of my life this is consuming. I am sure you all feel this same way.

With God's grace we all will continue this gift of life and overcome the challenges given. Thanks for listening I wish you all the very best.

Just curious, why spacing the shots out? I would think you would do that after you'd regained energy for awhile not before. I'd worry about backsliding.

Did you dr suggest it?

Jill

HI - I have a question for you, & anyone else suffering from anemia:

Are you drinking tea - hot or iced - with your meals? I learned some time ago that the tannins in tea can completely block the absorption of iron, when taken with a meal.

My anemia problem completely disappeared when I began either avoiding tea, or simply drinking it BETWEEN meals instead of during them.

HI - I have a question for you, & anyone else suffering from anemia:

Are you drinking tea - hot or iced - with your meals? I learned some time ago that the tannins in tea can completely block the absorption of iron, when taken with a meal.

My anemia problem completely disappeared when I began either avoiding tea, or simply drinking it BETWEEN meals instead of during them.

Someone here correct me if I'm wrong, but iron has nothing to do with shortage of B-12, so drinking tea and blocking iron wouldn't apply in this case.

Thanks to all for the input. Lucky for me I'm not a big tea drinker and thanks for the thought. In my case unfortunately I can't absorb the B12vitamin since I have both PA and celiac (double whammy). I don't know about you but if and when I do drink tea it has to be later in the day or my stomach cramps.

I went to see the Dr today and the verdict is: a virus attacking my inner ear along with lots of sinus swelling. I guess it's the pollen in the air. I have been fighting a rogue virus now for 5 weeks - my mother has had it since Christmas. If course as usual lab work pending.

And I must have a great doctor because he really listens to me. After telling him that the muscle spasms and tightness always shows up 3-4 days prior to my 2 week injection he agreed very easily with me to stay on 2 week injections.

Oh yeah and my blood pressure was thru the roof, no wonder I'm feeling horrible. Since this usually happens when I am sick I get to watch it daily stop all caffeine and follow up with the Dr in two weeks.

I also asked him about the fatigue and he said that it shouldn't be a problem to exercise just take it slow since I've been down for 2 years.

I am so glad you're not spacing out your shots. Especially since you're fighting something. Your body needs all the B12 it can get right now.

Interestingly, my bp goes up when my B12 goes low. I don't know if there's a connection, but it is something to pay attention to.

Take care,
Jill