Anyone improve after being bedridden?

[Blinkysmom]

I was misdiagnosed for several years until I went to an integrative medicine Doctor. I'm so weak, I'm bedridden. My legs don't work; I do use a walker. But I tire very easily. I am on a treatment of hydroxocobalamin, B6 and folate. I self inject every other day. I've been doing this for a month - the only improvement I've noticed is that my legs don't burn anymore. I need some hope - can I get better? No one understands and just calls me lazy. Thanks, in advance.

[Lisahelen]

The fact that you have already noticed that your legs arent burning is a hopeful sign. If you read posts on here it can take some people a significant time to heal and for a few unfortunates they never get back to how they were originally. Keep injecting and with luck you will see even more improvement.

[clivealive Forum Support]

I wish you well Blinkysmom

Try to be positive

Make a list of all your neurological symptoms and cross them off one by one as they improve.

My heart goes out to you.

[Blinkysmom in reply to clivealive]

Thanks.

[Gambit62 Administrator]

which type of B12 is in the injections - may be worth tyring a different form as people do respond differently to different forms - especially true if it is methyl cobalamin

[Blinkysmom in reply to Gambit62]

I tried 2 months of methyl and am now on hydroxy. I didn't respond to methyl. I did respond (burning stopped in my legs).

[deniseinmilden]

When I was wiped out with B12d nearly 20 years ago and was diagnosed with ME / CFS I was bed ridden for many months. With self suggested oral supplementation I gradually got better and at best I was at least 80% of my potential. About 5 years ago I started to decline again, until this time 2 years ago I could barely walk or talk, was sleeping over 15 hours a day and couldn't do anything. I started SI then and have improved since.

I SI 1.5 mg hydroxocobalamin daily and take a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron.

I am now able to stay awake for full days every day, work in physically demanding jobs and look after a horse. I am able to look after myself and now have a new partner.

My balance is back, I can think and remember again, I have spells where I don't have pain from my nerve damage and do actually feel well at times. It has been a real struggle but being single and self-employed, I had nothing to lose so medicated at very high levels and listened to my body.

I am forever grateful to the people here who saved my life.

Good luck!

[Blinkysmom in reply to deniseinmilden]

Thank you for sharing your story. What oral supplementation did you supplement with? And how much?

[deniseinmilden in reply to Blinkysmom]

It was a general supplement (I don't remember the exact one... maybe a Sanatogen one? plus extra folic acid) that helped for a few years but eventually I became unable to absorb B12 and now have to inject to get enough.

[Ryaan in reply to deniseinmilden]

Thanks for sharing.

Can I ask how much Folate , potassium, magnesium and iron you take daily.

[deniseinmilden in reply to Ryaan]

Hi Ryaan!

I was on very high (NOT recommended) levels every day:

2 x multivitamin and mineral tablets

Methylfolate 6 x 800 mcg tablets

Potassium - lots from my diet plus 2+ teaspoons of Lo-Salt

Magnesium - diet plus 3/4 to 1 teaspoon of Magnesium chloride flakes plus magnesium in my bathwater or sprayed on my skin

Iron - 1 iron bisglysinate capsule per day

Thankfully I have been able to scale all these back significantly as I have improved and now only need small amounts of additional salts to supplement my diet.

I regularly reduce the amounts of things I take to check what level I can get away with, without increasing my symptoms again.

I also need to eat pork products most days and fish every few days to stay well. This is probably to supply specific amino acids.

[Ryaan in reply to deniseinmilden]

Definitely not RDA"s but glad it worked for you.

[Blinkysmom]

My iron was fine, 240mg. Magnesium glycinate/maleate, B complex, 9600 mcg folate, 450 mg. b6 and Losartin for blood pressure which has potassium in it. In fact I had too much potassium at one time.

[Hidden]

Welcome, Blinkysmom.

Yes, you can have improvement -- much more! But it will take a very long time. You may hear of some "conventional wisdom" that there can be improvement only for the first year of treatment -- that is not true!

It is about eight and a half years since my diagnosis and start of treatment. My treatment has had to be stepped up at times, and I am still getting some improvement. It comes only slowly.

We understand.

[deniseinmilden in reply to Hidden]

That's brilliant kewpie: thank you for that inspiration!

[maiken]

Wow, that is a serious amount of B6 Blinkysmom. Were you deficient in B6 when you started?

[Blinkysmom in reply to maiken]

Yes, I had a B6 deficiency and high homocysteine levels. I take 4 homocysteine support tabs which have 50 mg. of b6 and a b complex with 250 mg. of b6.

[maiken]

Please make sure you don't trust any other than the blood test for determinating a b6 deficiency, and keep an eye on those levels. With the amounts you are taking, look out for toxicity.