coming back to life

[Eowyn1]

Hi all I'm new to this forum and really don't quite know how to navigate here- I keep reading posts from 2 years ago and thinking is anybody out there now- anyway just wanted to connect with others on this very bizarre journey. Mine is typical story, over 4 years my health steadily declined combined with a wierd staggering off-balance walk (which elicited only scorn and eye-rolling from every medical person) couldn't sit or stand up . . . any way I hit the bottom last summer (it felt like I was dying) -- so I tried one last thing and went to a Naturopath and she did basic blood test for nutrient levels and we found I was quite low in all the B vitamins. Started B12 injections in December (only once a week) and now I feel like a completely different person. I can stand without swaying, walk without running into walls or collapsing. And I am starting to think again! I am able to cook for pleasure for the 1st time in 4 years.

3 weeks ago read the book by that nice man Martyn Hooper. (thank you Mr. Hooper) And from book discovered the protocol for repairing nerve damage and began injections 3 times a week. Holy Cow things have really picked up the pace. I'm getting wierd tingling sensations in feet and legs (found out 4 weeks ago I have significant neuropathy in feet). Is it normal with more frequent B12 shots to have all your symptoms kinda come back for a while? I hope so. It sounds funny but it feels like my whole body is waking up.

I have also been supplementing with all the B vitamins and zinc for 6 months, and have included B6 and magnesium in the injections. I notice that it is suggested to take Iron and folate as well. Does anyone include B1 in the injection? or supplement with B1?

It would be nice to hear from others going through this. 2 friends are calling me a miracle, and the friend who drives me to get the shots looked at me when I explained why I had to have an injection and not a pill and with a look of dawning comprehension and horror said "you could have been living on a Kale farm doing yoga every day in the middle of the Kale and you would never have gotten better."

Must walk dog now (oh yeah, I wasn't walking the little dogs at all and now have new very energetic dog and we walk twice a day and I even shuffle/jog a little) If anybody reads this post I really wish you well in recovery and hope you have a lovely day!

P.S. - Is anybody else really really mad knowing now that all it took was a shot and all that suffering could have very easily been taken care of ?????? I live in the States and realize that alot of you are "across the pond" but heck I'm kind of all fired up, I want to change some laws and emergency room blood screening protocols.

P.P.S - to the lady who posted about her fissured tongue - my tongue in 6 months is now almost completely pink and smooth -- I used to have canyons of fissures all over my tongue for years.

[fbirder]

Be careful about njecting B6. It can cause peripheral neuropathy.

[clivealive Forum Support]

Hi Eowyn1

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

It is important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Hb. Both iron and folate may be needed.

I am not a medically trained person but I've had Pernicious Anemia (a form of B12 deficiency) for more than 46 years.

I wish you well and am glad to read that you are feeling so much better.

[spacey1]

Glad you're feeling better!

If you want to read the recent posts, click on 'posts' at the top of the page, and they appear in date order, most recent first

[fionasloane]

Just at the early stages of treatment myself (I'm in Scotland). I'm mostly just happy to be making progress but the diagnosis and treatment is so poor here that I really also want to do something to change the system. I wonder if we could co-ordinate a media blitz across regions and countries, talking to our elected representatives, the media, doing a hashtag campaign to get some publicity to raise the profile of this?

[Eowyn1 in reply to fionasloane]

hi fionaslone! I am such a doofus, I am just reading these replies now. Just figured out what the little bell at the top of page is Hey yes lets do something to try to raise awareness. Although I've been recovering for a year now and I am coming to believe that there is no awareness to raise.The few people I know kind of roll eyes and look real bored whenever I start telling how a vitamin brought me back to the land of the living. Their attitude is "well it's only a vitamin, surely that can't be why you feel better." Then they say something like "I knew you could snap out of it." I wonder if there is a youtube lecture from Martyn Hooper who I believe is working with officials to try to get the B12 and the intrisic factortests added to all routine blood work ups. Hey do you all really eat deep fried mars bars??? If so that is just fantastic! Have a good week -- and keep getting your injections!

[Teriburke]

So glad you’re starting to feel better, great to hear that

[Eowyn1]

It's really bad in U.S. - I have completely given up on doctors and sadly have to go to a naturopath. The scary thing is, I now know way more than they do about B12, and I'm paying them for the injections! I am doing all my own research into this, and if I let it slip to a regular doctor they look at me as though I am so stupid, and tell me I shouldn't believe what I read on the internet. I am just so glad I found this forum. I can't figure out what the problem is - I think the research teams found the remedy to pernicious anemia in the 1940's or something, so why is the medical profession is sooooooooo angry about us asking questions, or saying we feel we need more frequent injections, . I went to a neurologist last summer who was seemingly irritated that I figured out on my own that I might be helped by B12 injections. I got the lecture about "too much is a bad thing, etc." It seems to offend them if you get better without them. I am starting to think that doctors could use a bit of B12 Oh well, there is really no end at all to a discussion of mistreatment by ignorant doctors. Good luck everybody!